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.
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.
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.
I like making photographs and find photography incredibly helpful – as a record of holidays and places, of the gas reading, or just to note the location of sockets on the back of the television; as a shield to deflect attention in busy places or to reduce anxiety in fearful situations (like zip-lining); or my favourite, photographing insects and minute things. The world is a fractal, with detail at all scales from continents to sand grains, so moving far away (in an aircraft) or zooming in close can be very interesting. No matter how far or close, the image always has details.
This is a weed leaf that blew off an extension roof. Taking a photograph at high magnification can be difficult because the depth of field (the region in focus) is very small, and only the front edge and water drop are in focus here. If you are wondering, this leaf is about 6mm (1/4″) wide.
Taking a sequence of images (twelve, in this case) focused progressively from the front to the back of the leaf saves a collection of “slices” of in-focus leaf at different distances. This allows me to make a composite image with the whole leaf in focus. (I used align_image_stack and enfuse to align all the images and then combine them into one focused composite).
This is the leaf on my forefinger, which is about 18mm across. You might notice a dark smudge on the stem, just below the front edge of the leaf. She is an early visitor.Zooming a bit closer reveals her to be an aphid of some form. She is about 0.8 mm long. I had no idea that she was there when I picked up the leaves, and only noticed after I had taken the first series of photographs.
The world is full of incredible detail like this, which we miss most of the time in favour of objects on our own scale and objects that have social connections. My family often complain, especially on holiday, when I get distracted by the beautiful details at ground level.
The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, is a definitive document for many professionals assessing, diagnosing and providing services related to autism. The DSM has been slow to recognise of Hans Asperger’s work (see also Historical context of Asperger’s first (1938) autism paper), of Asperger syndrome and Lorna Wing’s contribution to the wider autism/autistic spectrum .
Professionals inform parents, carers, teachers and others about the meaning of ‘autism’ and are often held in awe. The identity of autistic people has been impacted by the ebb and flow of ideas and consensus in the DSM.
This is a description of some images I have been creating of the definition of autism in the full text of every version of the DSM, from 1952 to the present.
I love statistics and numerical analysis, a love that many people do not share — statistics is one of quickest ways to halt a dinner conversation. Statistics is a style of argument that is neither right nor wrong, as useful as any other logical process and has a beauty in summarising or visualizing the subjects under examination in ways that allow two or more things to be compared.
In the case of film, it can be hard to communicate the incredible experience of sitting for an hour or two, absorbed in action, dramatic tension and emotion. Critics reviews and plot summaries (like those on IMDb) are one method of side-by-side comparison, or even more briefly in the star-ratings (e.g. 8.5 out of 10 for “Psycho”). This post describes some numerical and sampling techniques that I use to create single-image summaries of films and books. These images make stunning wall posters and I have had a few printed as big as 30″ by 20″ to display.
As someone with both an autism spectrum diagnosis and a history of mental illness, I fall into that intersectionality politely called ’dual diagnosis’, although it often feels more like ’falling between two stools’ than eligibility for duplicated supports. I am lucky to have won the postcode lottery and live in Cork City, the base of the only HSE-funded community support service in the country for adults with Asperger syndrome, where I get excellent social and other supports from Aspect, part of the Cork Association for Autism. I am unlucky to live in a country that otherwise has no services whatsoever for autistic adults (post 18 years) and where ’dual diagnosis’ means being shuffled between mental health services (as and when mental health is impacted) and social or disability support services. About 70-80% of people with Asperger syndrome also experience depression, anxiety and emotional difficulties. Suicidal thoughts are common and often difficult to identify. I want to share a particularly difficult recent encounter with psychiatric care that others in a similar position may find helpful to talk about.
In each of the last two years I have been involved in a film discussion group run by and for people with an Asperger syndrome or autism spectrum diagnosis. The group has fluctuated in membership between four and twelve people, with a core of continuous members. We have watched predominantly feature films and documentaries in which at least one principal character is explicitly identified as ’autistic’ within the film, in publicity material or according to audiences. Our group has displayed a phenomenal knowledge of cinema, television and relevant links to other art forms such as fiction, graphic novels and computer games with the same characters. The film discussion group has been a positive experience with a good reception.
The enthusiasm of the group and the incredible depth and breadth of knowledge about cinema and media shows a huge wealth of systematic learning while viewing, perhaps at a level that family and others are not aware. Reading ’comics’, playing console games and watching ’kid’s TV’ can have undiscovered depths of meaning for people who have limited opportunities to discuss their particular interests.
I hope this blog post might encourage you to start discussion groups of film, fiction or whatever areas interest you, and I would be pleased offer advice or attend further sessions. I would be especially interested in any public screenings of autism-themed films — the Cork Film Festival screening of “Life, Animated” (http://corkfilmfest.org/events/life-animated/) and panel discussion (which I was thrilled to be part of) was packed, and all the feedback that reached me was incredibly positive.
I have had some serious illness over the past year, which I will write about in a post shortly. As a result I have been saving my energy for a number of important projects that I needed to keep on track, and I have missed my goal of posting here about once a week.
As a result I have built up a little pile of completed work that I hope to write up quite swiftly and you may see a small deluge of posts, if I have the energy to get them all written up.
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.