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.
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.
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.
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.
Fitness and other tracking systems have the potential to measure some aspects of quality of life and possibly suggest changes that will improve future quality of life. I have worn a simple fitness tracker (a pedometer-style step-counting watch) for almost two years and have now combined the fitness tracker data with other sources – my real-life and online social activity – to look at how quality of life might be assessed.
The fitness tracker tells me my total steps and primitive measures of sleep. The real-life activities are social and work activities from my diary and photographs from my camera (which fill in gaps about where I was). The online activity is taken from the number of email and Twitter messages that I have sent per day. Some of the data is noisy and I have averaged over a week.
The take-home message is that physical activity improves quality of life. Twitter (or at least the way I have been using Twitter) has a negative impact. Doing more to be outside the house, even simply taking my activity to another place, would improve my fitness and happiness.
Continue reading Fitness tracking the quality of my life
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.
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.
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.
I recently had a conversation with a psychiatrist about a long-standing problem I have with waking, in a state of panic, frequently drenched in sweat and having vividly unpleasant thoughts in my head. Sometimes the thoughts and sensations of the dream can take ages to clear. The psychiatrist’s take on it was amazingly fresh: perhaps this is a consequence of neurology and not of psychic disturbance. The dream may be evoked by the senses (a sound or a smell), or represent some attempt at rationalizing a sensory experience. This has implications for how to respond to sleep disturbance and distressing dreams.