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.
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).
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.
Hans Asperger first described the clinical findings that are today associated with Asperger syndrome in a workshop on 3rd October 1938, published as a 4,000 word article Asperger (1938) Das psychisch abnorme Kind. Wiener Klinische Wochenschrift, 49:1314-1317. In English this would be “The psychically abnormal child”, although it might equally be another term such as “mentally” if translated today. The following summarises the content .
Hans Asperger published his first paper on autism in 1938 in German in the journal Wiener Klinische Wochenschrift [The Vienna Clinical Weekly], five years before Leo Kanner’s first publication in 1943 in English. These were by no means the first papers about “autism“, because the term was already used in the description of schizophrenia by Eugen Bleuler in German in 1913. Four strands of work – about autism and schizophrenia, in German and English – continued to both enhance and confuse the understanding of autism for decades. Most notably Asperger’s 1938 contribution was ignored as the pre-war prominence of Viennese medicine gave way to post-war shame and disgrace.
The transformation of “autism” from a predominantly German term in schizophrenia, to the predominantly English term we undersatnd is summarised well in the word-frequency plot of the publication sequence.
I recently went on a charming little journey through time to track down a quote attributed to the poet Samuel Taylor Coleridge (1772-1834), “we do not feel horror because we are haunted by a sphinx, we dream a sphinx in order to explain the horror that we feel”. The context and the journey through references adds beautifully to my earlier post about dreams and nightmares. Coleridge was disturbed by his nightmares throughout his life and shared his thoughts about their origins.
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.