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.
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 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.
I read and loved “The Eagle Tree” by Ned Hayes, an absorbing and intense story of a boy’s love for trees and his intense fascination with the world and natural processes that surround him – an environment that, unfortunately, everyone else seems oblivious to. Amongst this natural beauty is The Eagle Tree, possibly the last Ponderosa Pine west of the Cascade Mountains. The tree can’t be saved, but perhaps it can be climbed before it is too late.
The BBC has a fabulous collection of autism-themed programmes and series for autism acceptance month, which are available for a further 2 weeks (from the first episode date), so catch them while they are available. The young folk all know how to tune in to and record the BBC, so ask them.
The experience of sensory overload can be difficult to describe, or difficult to imagine, without having some common ground of experience to use as a base. Attention deficit (which is acute sensitivity combined with an inability to focus) means hearing, seeing and smelling what feels like everything, all at once. This short (50 seconds) video attempts to provide a shared experience of sensory exposure to discuss the feelings of sensory overload.
I have talked and written about ‘social calories’ to describe the impact that social interaction has on me, usually in terms of trying to limit my intake of social calories. This would often mean a choice between one activity with lots of gentle socialising or another with shorter, intense interaction. Too many social calories make me (physically) sick if I don’t pace myself. In short, Daisy wrote of one social occasion, “a surfeit of ‘social calories’ – the effort of making social contact with so many unfamiliar people in such a short time, and eating unfamiliar food, made me feel sick.”The Enchanted Doors, “A Book to Read When You Have Asperger Syndrome”. You can watch a presentation with visuals — about 13 minutes in, I talk about social calories and social misunderstandings in The Spooky Powers of Normal People).