Last year I completed a mammoth task of scanning photographs and duplicating colour slides that belonged to our parents, and sent electronic copies of everything to my siblings. The collection amounts to just under 7,000 images (about 300 black and white prints, 2,700 colour prints and 3,800 colour slides) which I scanned over about 28 months, leaving the equipment set up to scan little batches whenever I had spare time. There are some interesting technical and organisational challenges in handling a project of this size, but it has been well worth it. Buried in various cardboard boxes, envelopes and filing cabinets there is a wealth of shared experiences and meanings, like a kind of PECS (Picture Exchange Communication System) for all the emotionally-loaded background a family has in common. Now that they are indexed by country, year, event and participants, it is easy to locate specific examples of “it feels like this”, without needing to identify and describe the feelings. The methods might interest anyone else with a heritage of physical photographs, along with the feelings and sensations that viewing them has had.
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 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.
If autism was assumed to affect all people at all ages approximately equally, there are somewhere between 15,000 (1 in 300) and 100,000 (1 in 43) autistic people of all ages in the Irish population of 4.6 million. It should be noted that 75% of the Irish population is older than 18 years and most will not have been assessed or diagnosed, so many autistic people are unrecognized. Recognition is widening from “severe autism in childhood” to “mild autism” and to older ages, which is probably the largest factor driving increased autism prevalence. We have also moved from recognizing approximately one autistic pupil per school to recognizing one autistic child per class in the space of ten or fifteen years.
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.
We recently tried an informal film discussion group for several weeks, which was immensely instructive and enjoyable. We watched and talked about a range of films specifically identified as “autism” films, either because a principal character is explicitly identified as autistic or because public opinion recognises at least one character as autistic. We also spent one night talking about a range of “autism” television series. (You can find many lists online, or my collection of mini-reviews here http://gallery.stuartneilson.com/index.php?album=Autism-films/Autism-feature-films).
Fitness and other tracking systems have the potential to measure some aspects of quality of life and possibly suggest changes that will improve future quality of life. I have worn a simple fitness tracker (a pedometer-style step-counting watch) for almost two years and have now combined the fitness tracker data with other sources – my real-life and online social activity – to look at how quality of life might be assessed.
The fitness tracker tells me my total steps and primitive measures of sleep. The real-life activities are social and work activities from my diary and photographs from my camera (which fill in gaps about where I was). The online activity is taken from the number of email and Twitter messages that I have sent per day. Some of the data is noisy and I have averaged over a week.
The take-home message is that physical activity improves quality of life. Twitter (or at least the way I have been using Twitter) has a negative impact. Doing more to be outside the house, even simply taking my activity to another place, would improve my fitness and happiness.
Continue reading Fitness tracking the quality of my life
“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 have been suffering from anxiety recently and, unlike Asperger syndrome, anxiety does cause me a great deal of distress. I do call anxiety ‘suffering’. I don’t know the answers to anxiety (or even, much of the time, where my anxiety comes from), but I have a few techniques for reducing or distracting my mind from anxious thoughts.