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.
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.)
(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.
Christmas is one of the hardest times of the year for many people with autistic spectrum disorders. The combination of sensory exposure and social exposure can lead to sensory and emotional overload, often without the usual safe spaces to go and decompress because there are so many people present in the house. Equally, Christmas can be an opportunity to travel though some well-rehearsed and pleasing rituals with beautiful sensory experiences. I hate and love Christmas in equal measure.
Most people find it hard to settle down to work, especially a new task that begins with a blank page or pile of materials. Some of us rush out and buy a brand-new set of pencils, brushes or whatever tools in the hope that the thrill of opening some lovely, new toy will into a thrill for the job in hand. The reality is that work is often work — and if you have a job that is play, that is absolutely wonderful. (Some of the best work I do is play, where my interests and my work are exactly the same thing, so nothing holds me back from starting and keeping going). Mostly, though, work takes effort.
These are some of my techniques to create a space in which work is easier and more productive. Although I am talking about writing, because most of my time is spent putting words into documents, the techniques might be applicable to all kinds of other work leisure.
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.”