I have written before about the major topics that appear in newspaper articles that are “about autism”*, with their bias towards articles that mention boys, children, mothering and negative words. Autism is more often written about as a disorder, of a child, in the context of a parent (usually the mother) and as a sufferer, victim or burden. In this post I am looking at how newspapers write about autism itself, the choice of wording and phrasing that surround the words ‘autism’, ‘autistic’ or ‘Asperger’. Trying to visualise the use of words, in large volumes of text, is a very exciting topic and the results here are well worth studying in detail.
My own position on the use of words is to try to accurately reflect the terms that people choose themselves, or in the sources that I am referencing. The images here are convincing evidence that some word choices have a significant effect on positive reporting. In particular, the (identity-first language) adjective ‘autistic’ favours thoughts about personhood and the (person-first language) noun ‘autism’ is associated with negative, dehumanised phrasing. This is consistent with the findings of the survey “Which terms should be used to describe autism? Perspectives from the UK autism community”.
There are some technical notes at the end for anyone interested in the computer methods used to produce the images.
I have been spending a little more time than I would like investigating health clinics, diagnostic procedures and hospital. A recurring theme for me is inadequate, conflicting or confusing communication of potentially important medical information. My own position is that I have a wide vocabulary and good verbal fluency, but my listening comprehension is sometimes over-ridden by my own preconceptions or overwhelmed by sensory and emotional overload. At my worst I babble very fast, repetitively ask for confirmation of the same answer or simply become mute. This confuses people.
I am currently in-between two abdominal surgeries, the first involving 3 nights recovery in Intensive Care and a further 4 in a ward; the second will follow 6 weeks of recuperation at home (in which I am barred from lifting anything heavier than a jug of water). Needless to say the delivery of a diagnosis of major surgery at 53 requires some emotional processing (which I don’t think I have really started) and a great deal of exposure to beeping monitors, machinery and over-lapping conversation.
The staff have been absolutely fantastic and extremely accommodating. There are some areas of procedure and infrastructure that I found confusing.
“The Sound and the Fury” is typically viewed as a difficult book, involving a stream-of-consciousness style and multiple perspectives to explore events the final throes of a plantation family in Mississippi just 30 – 60 years after the abolition of slavery in the United States. One of these perspectives is that of Benjy, a character usually described as an ‘idiot’ in the words of the twentieth century. He might now be termed ‘proundly intellectually disabled’. Some authors have identified traits they recognise as autistic. His correct diagnosis is not relevant to the depth that Faulkner brings to the character’s own mind and perspective in the first section of the book, written in the first person as the consciousness of an adult man who has no spoken words. Continue reading Autistic expression in “The Sound and the Fury” by William Faulkner (1929)→
I had never been aware of “curry sauce” until moving to Ireland, but recently tried recreating it from fresh ingredients at home, as requested by my teenager. Curry sauce is part of a tradition of taking the alluringly exotic aspects of foreign foods and repackaging them into a form that is safely not too Other. A full-blown aloo gobi and chapatis would be excessive, but curry sauce on chips is a comforting kind of daring. Similar recipes include Coronation Chicken, a blend of curry powder, cream, chicken and raisins that can be spread in a bread sandwich. Coronation Chicken was itself based on the even less threatening Jubilee Chicken, a blend of mayonnaise and hints of ingredients from all over the British Empire. (Bananas, papayas, raisins, coconuts, limes and all kinds of “foreign” are frequently thrown on or into completely inappropriate recipes, all “foreign” being much the same thing).
I have not posted anything in a while, because of a lot of internal strife and withdrawal from the world. Anxiety is hard to write about, because it often has no words – and because alexithymic people especially have trouble in identifying and describing feelings. Actions are easy: throughout a four-week period in February I left my house on just four occasions, because my activity tracking wrist-band and phone calendar tell me so. All four were appointments to lecture or with the wonderful people at Aspect (http://corkautism.ie/aspect/) who support me.
We usually talk about autism and many other aspects of our everyday experience as a disorder, with all the connotations that medical interpretations bring – of disease, individual tragedy and suffering. Autism is a mental disorder within the Diagnostic and Statistical Manual of Mental Disorders (DSM), a dyad or triad of impairments, a learning or language delay and a set of deficits. All of these words medicalize the everyday experience of people with autism. Some elements of life — particularly the minutes spent in consultation with a doctor — are medical, but as soon as you leave the consultation room, you return to being a child, a boy, a girl, a person, or whatever else is your primary identity. Taking on the belief that you are diseased and in need of cure (especially when there is no cure, nor any immediate prospect of cure for autism) can be very damaging to self-esteem.
Public spaces challenge everyone to sensory experiences that they have little control over, other than leaving or changing the time and places you visit. Sensory experiences include the obvious external 5 senses, sight, sound, smell, taste and touch. They also include the internal senses, vestibular (balance, challenged on escalators and lifts), proprioceptive (body location, challenged in unfamilar small spaces) and temperature (challenged when you have no control over temperature, but only one set of clothes).
“I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.” – Judy Rapoport, a senior child psychiatrist at the National Institutes of Health, in Slate magazine.
I often think about the language of disability, from three sometimes conflicting perspectives – fictional depictions that are positive, political advocacy about disability and individual access to services. Fiction works best for me when the characters are real, and when their impairment or disability is only described (if at all) in relation to events in the plot. Political advocacy is mostly about raising awareness and gaining group recognition, with a strong focus on group identity. Access to individual services is often dependent on ticking the label that matches a box on a bureaucrat’s form or a piece of antiquated legislation (even if it says ‘Zebra’).