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 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.
Adults with Asperger syndrome sometimes find themselves in a twilight land between social, medical and disability supports, where the issues of daily living are neither a ’medical problem’ nor a ’disability problem’ — just like ’normal’ people. Many adults with Asperger syndrome have arrived through other diagnoses first, or have current mental health issues (comorbidities). Formal supports tend to assume one primary need, such as disability support if IQ is below a threshold of 70 or mental health services when psychiatric symptoms are deemed clinically significant. The formal supports are not integrated, may prohibit access to more than one service and address social issues through their own re-interpretations. Medication can be very helpful, but can also be used as a substitute for supporting the life issues that are causing difficulty.
This is a brief post to note a collection of short reviews about non-fiction books about autism, relevant mostly to adolescents or adults who have a diagnosis. They include autobiography from Luke Jackson, Temple Grandin and Liane Holliday Willey; historical work from Uta Frith, Adam Feinstein and Steve Silberman; and practical intervention texts from Tony Attwood, Mohammed Ghaziuddin and Florica Stone.
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).