Category Archives: Disablement

Autism and dual diagnosis in a psychiatric dystopia

"I ain’t broke ... and you bastards ain’t never gonna break me." (Bitch Planet #3, by writer Kelly Sue DeConnick and artist Valentine De Landro, 2015).
“I ain’t broke … and you bastards ain’t never gonna break me.” (Bitch Planet #3, by writer Kelly Sue DeConnick and artist Valentine De Landro, 2015).

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.

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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).

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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.

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Medical communication barriers

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.

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Autistic expression in “The Sound and the Fury” by William Faulkner (1929)

Faulkner, William - The sound and the fury“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.
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Autism and curry sauce

I had never been aware of “curry sauce” until moving to Ireland, but recently tried recreating it from fresh ingredients at home, as requested by my teenager. Curry sauce is part of a tradition of taking the alluringly exotic aspects of foreign foods and repackaging them into a form that is safely not too Other. A full-blown aloo gobi and chapatis would be excessive, but curry sauce on chips is a comforting kind of daring. Similar recipes include Coronation Chicken, a blend of curry powder, cream, chicken and raisins that can be spread in a bread sandwich. Coronation Chicken was itself based on the even less threatening Jubilee Chicken, a blend of mayonnaise and hints of ingredients from all over the British Empire. (Bananas, papayas, raisins, coconuts, limes and all kinds of “foreign” are frequently thrown on or into completely inappropriate recipes, all “foreign” being much the same thing).

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The fear

I have not posted anything in a while, because of a lot of internal strife and withdrawal from the world. Anxiety is hard to write about, because it often has no words – and because alexithymic people especially have trouble in identifying and describing feelings. Actions are easy: throughout a four-week period in February I left my house on just four occasions, because my activity tracking wrist-band and phone calendar tell me so. All four were appointments to lecture or with the wonderful people at Aspect (http://corkautism.ie/aspect/) who support me.

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Disablement, like homophobia, is social oppression

We usually talk about autism and many other aspects of our everyday experience as a disorder, with all the connotations that medical interpretations bring – of disease, individual tragedy and suffering. Autism is a mental disorder within the Diagnostic and Statistical Manual of Mental Disorders (DSM), a dyad or triad of impairments, a learning or language delay and a set of deficits. All of these words medicalize the everyday experience of people with autism. Some elements of life — particularly the minutes spent in consultation with a doctor — are medical, but as soon as you leave the consultation room, you return to being a child, a boy, a girl, a person, or whatever else is your primary identity. Taking on the belief that you are diseased and in need of cure (especially when there is no cure, nor any immediate prospect of cure for autism) can be very damaging to self-esteem.

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Sensory issues in public spaces

Public spaces challenge everyone to sensory experiences that they have little control over, other than leaving or changing the time and places you visit. Sensory experiences include the obvious external 5 senses, sight, sound, smell, taste and touch. They also include the internal senses, vestibular (balance, challenged on escalators and lifts), proprioceptive (body location, challenged in unfamilar small spaces) and temperature (challenged when you have no control over temperature, but only one set of clothes).

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