I have a chapter in a new anthology of experiences written by 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.
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”
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”
I have been making some images recently that attempt to capture, for me, the ‘feel’ of an event or action. Photographers talk about “the decisive moment”, the title of‘s most famous book (although the French title is actually “Images on the Sly”). I am thinking more of “the decisive motion” – what event, movement or attention-grabbing object fills the frame in memory? I have been taking short sequences of video and creating a single image from all of the frames, to locate images that capture my sense of memory.
The best of these include motion heatmaps, images coloured by the amount of movement in each pixel. In a classroom this should be a map of the things that matter (the teacher, friends, intentional moving images), rather than distractions (fidgeting, wafting posters and reflections). The image above shows areas of high motion (red) and stillness (blue) in a classroom.
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.
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.
The Office for National Statistics (ONS) produces comprehensive data tables about the UK, including tables of special needs provision in schools across 152 local authorities in England. Special needs are categorised within this data by primary need, including ASD. The overall rate is 1.26% of all state-funded school pupils, ranging from about 0.5% in the local authorities with the lowest rates to about 3.5% in the authorities with the highest rates. This provides a good example of what may possible when the Autism Bill is enacted. Mapping the distribution raises many interesting questions about the reasons for regional variation, changing rates of ASD and whether there is inequality in provision.
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.
I am sad to be taking a break from lecturing on Autism Studies due to a number of changes imposed on the teaching team in the last couple of weeks. A reduction in coordination support and downgrading of tutorials have put me in a position where I do not feel I can continue lecturing. I do not think I would have enough support to meet the unpaid expectation on lecturers’ time, and I describe the background in full below.
I have really enjoyed the past three years and I am proud of having been a part of the team that developed the programme, pushed it through the approval process and delivered Autism Studies at UCC. The collaboration with other staff has been so fruitful and, above all, I have learned so much from the students. It has been wonderful to teach a class that has such a breadth and depth of knowledge of the subject.
Thank you all so much.