Category Archives: Portayal

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.

Continue reading The sensory impact of story-telling

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.

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

Autism and identity in the DSM

The DSM (autism section) alluvial plotThe 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.

Continue reading Autism and identity in the DSM

Studying narrative in film and novels through data visualization

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.

Continue reading Studying narrative in film and novels through data visualization

Asperger syndrome film discussion group

AutismFeature Films
Feature films with a leading autistic character

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.

Some initial resources that might help are a Guardian article on “How to start a film club” (https://www.theguardian.com/lifeandstyle/2014/sep/12/how-to-start-a-film-club) and a BBC Radio 4 feature on “Running a bookclub” (http://www.bbc.co.uk/radio4/features/book-club/running-a-club/). You can find a starter list of autism-themed films (http://gallery.stuartneilson.com/index.php?album=Autism-films/Autism-feature-films) and fictional books (http://gallery.stuartneilson.com/index.php?album=ASD-fiction) on my website.

(Thanks especially to those who provided the resources, planning skills and personal support to get our group running, regularly, on time and in a comfortable space).

Continue reading Asperger syndrome film discussion group

How newspapers write about autism

The word ‘autism’ in context in newspaper articles

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.

Continue reading How newspapers write about autism

Super-parenting, autism blame and bad journalism

superman-superwoman Media headlines on stories describing an early childhood intervention connected better outcomes with better parenting and, by implication, poorer outcomes with worse parenting. The boldest headlines reanimated the still-warm corpse of the “Refrigerator Parent” school of autism blame, with vocal supporters filling the comment sections. It has to be stressed that the headlines were crass and insensitive, but the content of the articles was not all bad. The original research is interesting and makes no judgement of parenting qualities, or bad parenting as a cause of autism, or psychotherapy as a cure for autistic children or their parents.

Headlines ranged from the sober “Study offers potential breakthrough in care of children with autism” (the Guardian) to strongly implied blame and cure: “‘Super-parenting’ improves children’s autism” (BBC), “‘Super-parenting’ is the first therapy ‘that actually helps BEAT autism’” (Sun) and “First, treat the parents” (Economist). Any anger should be turned towards the thoughtless headline writers because the therapy describes an intervention (PACT) that examines parent-child interaction to help parents detect and reciprocate attempts at interaction by autistic children. These interactions may be subtle, non-obvious and unconventional.

I happened to be reading “In the Absence of Light” by Adrienne Wilder (2015) at the time, in which the character Grant expresses a neat summary of my own response, “love has nothing to do with it. If it did, every autistic child on this planet would excel. The truth is, most don’t.”

It is really worth reading the (open) paper, Pickles et al (2016) “Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial”. A comprehensive description of the PACT intervention in the Supplementary Material of Green et al (2010) Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial, which is also open. Michelle Dawson (2010) wrote that “The PACT entails an early autism intervention that was not widely promoted as effective or essential before it was fairly tested. That is a first in the history of autism research. It may also be the largest RCT of any kind of autism intervention ever published” http://autismcrisis.blogspot.ie/2010/08/making-autism-research-history.html. The field of early intervention is littered with hundreds of poorly conducted studies with unclear outcome measures, small sample sizes and unstandardised methods — the Cochrane Library identifies only 5 early intensive behavioural intervention (EIBI) publications to be ‘adequate’. The PACT authors describe their intervention as ‘parent-led’, but it might even be considered ‘child-led’ in that the parents are guided to respond to the child’s interactions, whatever they are.

Having read the intervention design, it is worth revisiting the excellent BBC documentary “Autism: Challenging Behaviour” (currently accessible on Vimeo) to observe how the ABA therapists filmed responded to (or rejected) interaction initiated by autistic children. One of the most moving moments is about ten minutes in, when Tobias places his forehead on the therapist’s knee and is forcibly sat upright to resume his clapping-response regime. The failure to recognise and respond to Tobias’ interaction is stark.

You could just stop reading here and go to the delightful therapy guide by Florica Stone (2003) “Autism — The Eighth Colour of the Rainbow: Learn to Speak Autistic” https://www.amazon.com/Autism-Eighth-Colour-Rainbow-Autistic/dp/1843101823. I did have to mentally edit out all references to ‘love’, but found the responsiveness of her methods to the child very positively written. If you want to read further, there is some history of parent blame in the autism industries.

Continue reading Super-parenting, autism blame and bad journalism

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.)

Continue reading Autism in print news

Autism in Irish print news media

(see the update to this post http://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

Belonging – some thoughts on “My Curious Documentary”

Curious-My Curious Documentary

This post was stimulated by watching and discussion about “My Curious Documentary” on BBC One, which will remain available on the BBC iPlayer for a while at http://www.bbc.co.uk/iplayer/episode/b06phq27/imagine-autumn-2015-3-my-curious-documentary. The makers describe the documentary as follows: “This feature documentary uses the highly successful stage adaptation of Mark Haddon’s novel, The Curious Incident of the Dog in the Night-Time to frame a cinematic exploration of being on the autistic spectrum.”

Sonia Boué presents an alternative take on the documentary and labelling in fiction, which is an essential counterpoint at “The Curious Incident of the Documentary in the Nighttime: An Apologia for the Autistic Label in a Work of Fiction.”

Continue reading Belonging – some thoughts on “My Curious Documentary”