Last year I was interviewed by Marie Walsh for a special issue of the journal Lacunae, the International Journal for Lacanian Psychoanalysis. Issue 16 of Lacunae had a special theme of autism reflected in Jean-Claude Maleval and Michel Grollier “Mottron’s Happy Autist is Not Kanner’s,” and Rob Weatherill, in “Being (Not) in the World Without a Father” in addition to this interview. (You can read the full table of contents or buy a copy from Karnac Books).
The full text of the interview is reproduced below with permission. Marie Walsh did an excellent job of shepherding my rambling thoughts into a cohesive narrative.
You can cite this interview as: Walsh, Marie. (2018). “Interview with Stuart Neilson, on the Lived Experience of Asperger’s Syndrome”. Lacunae, 16, 54-63.
Urban space is changing fast and despite the potential to increase urban space through growth, technology and social progress, the reality is often increasing exclusion and isolation. My own experience is one of a city increasingly paved over, squared off, noisier and lacking in calm spaces. Traffic, busy people and blank commercial facades have replaced more welcoming districts, because accessibility and family-friendly features are not a developer priority – they maximise borrowings, ramp up local property prices, take the increase in plot value and move on. Sustainable community is not a short-term money-spinner.
My perspective is very much the social exclusion and sensory impact of unsympathetic development. This post includes some images of Cork City and data maps of changing city demographics, at the level of the 74 electoral districts, to outline how the city is changing.
This is the full text of my chapter on sensory issues in public spaces, in the anthology “Knowing Why: Adult-Diagnosed Autistic People on Life and Autism”. The anthology presents contributions from 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.
The book contents are: Emerging From Burnout – Erin Human; Being the Dictionary: On Passions, Diagnosis, and Integration – A.J. Odasso; Sensory Issues and Social Inclusion – Stuart Neilson; Working While Autistic – Kelly Bron Johnson; All of Me: How Do I Know Where Blackness Ends and Neurodivergence Begins? – Morénike Giwa-Onaiwu; Using Intersecting Identities and Radically Accepting Communities to Increase Coping Skills – Samantha Hack; Autistic Navigation of Chronic Illness, Mental Illness, and Healthcare – Amythest Schaber; The Spectrum and Depression: Four Stories – M. Kelter; Cyborgs, Luddites, and To-Do List Apps: An Autistic Use of Technology – A.C. Buchanan.
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.
The anthology is available in paperback (£19.05) or as a Kindle eBook (£9.99) from Amazon or from Barnes & Noble.
Lacunae, the APPI International Journal for Lacanian Psychoanalysis, Issue 16 (July 2018) is specially-themed to autism with a translated article by the brilliant Jean-Claude Maleval, “Mottron’s Autist is not Kanner’s”; an interview with Irish autist Dr. Stuart Neilson conducted by Marie Walshe; Rob Weatherill on fatherhood “Being (Not) in the World Without a Father.”
Editor Eve Watson writes “Highlighting the importance of first-hand accounts in approaching the subjective experience of the being on the autistic spectrum an interview with Irish autist, Dr. Stuart Neilson, provides a fascinating first-hand account of the lived experience of Asperger’s Syndrome. The interview was conducted by Marie Walshe, on behalf of Lacunae and shows there is much to discern from Dr. Neilson’s personal narrative of living with Asperger’s.”
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 Henri Cartier-Bresson‘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.
I like making photographs and find photography incredibly helpful – as a record of holidays and places, of the gas reading, or just to note the location of sockets on the back of the television; as a shield to deflect attention in busy places or to reduce anxiety in fearful situations (like zip-lining); or my favourite, photographing insects and minute things. The world is a fractal, with detail at all scales from continents to sand grains, so moving far away (in an aircraft) or zooming in close can be very interesting. No matter how far or close, the image always has details.
This is a weed leaf that blew off an extension roof. Taking a photograph at high magnification can be difficult because the depth of field (the region in focus) is very small, and only the front edge and water drop are in focus here. If you are wondering, this leaf is about 6mm (1/4″) wide.
Taking a sequence of images (twelve, in this case) focused progressively from the front to the back of the leaf saves a collection of “slices” of in-focus leaf at different distances. This allows me to make a composite image with the whole leaf in focus. (I used align_image_stack and enfuse to align all the images and then combine them into one focused composite).
This is the leaf on my forefinger, which is about 18mm across. You might notice a dark smudge on the stem, just below the front edge of the leaf. She is an early visitor.Zooming a bit closer reveals her to be an aphid of some form. She is about 0.8 mm long. I had no idea that she was there when I picked up the leaves, and only noticed after I had taken the first series of photographs.
The world is full of incredible detail like this, which we miss most of the time in favour of objects on our own scale and objects that have social connections. My family often complain, especially on holiday, when I get distracted by the beautiful details at ground level.
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.