For many of us life already makes huge demands — relationships, health and wellbeing, financial concerns, managing a work-life balance — but when you have a dependent with severe autism those demands are compounded, and can bring one close to breaking point. However much love is given out. Jem Lester’s Shtum is about a man in just such a position; but while it is drawn largely on the author’s own experiences bringing up a son on the autistic spectrum it is nevertheless fiction. Still, autism runs as a major strand throughout. Shtum is also about how its manifestation here fits into a bigger picture involving individuals, institutions and collective responses.
Steve Silberman: NeuroTribes:
the legacy of autism and how to think smarter
about people who think differently
Foreword by Oliver Sacks
Allen & Unwin 2016 (2015)
I have to admit that this wasn’t quite what I was expected when I began it. I was looking forward to an updated discussion of what autism actually is and how people not actually on the spectrum can learn to think about those who are on it. Instead I found I was reading a 500-page doorstop of a book which provided complex case histories and followed a rigid but discursive timeline down from the 18th century. Much of the time I felt that the promises contained in the title and subtitle (particularly on describing autism’s ‘legacy’) and a confused impression about the book’s targeted audience (was it the general public or those directly affected by autism?) were being lost in a catalogue of contradictory opinions, varying terminology and distressing detail.
But then I realised that there was method in this apparent madness. By examining the general public’s confused reactions to autism’s manifestations over the centuries and the conflicting diagnoses and prognoses offered when individuals exhibited the condition Silberman was able to build up a picture of what autism was not; how those with the condition presented in a multiplicity of ways; and how — after many years seen as passive victims who might or might not be ‘cured’ — a significant number of those on the spectrum have started to self-advocate and be proactive in proclaiming its potential.
Autism Spectrum Disorder (ASD) was for long considered a condition solely characteristic of males, but thankfully it is now recognised that girls and women get it too. That not all professionals are up to speed on this is illustrated by the author’s own experience: only recently diagnosed herself (and this after several years studying the condition closely) she found to her distress a male clinician not only incredulous that a woman could have ASD but also questioning the reliability of the diagnosis. For females however there are many differences in their manifestation of the condition; because diagnosis of autism was traditionally based on male behaviour patterns, female presentation of those behaviours didn’t necessarily conform to male norms. In addition many females soon learn — usually better than males — how to play the game when it comes to social expectations, and this can mask their underlying condition.
But the crucial point to make is that women and girls are statistically just as likely to have the condition, and Hendrickx’s work aims to contribute to the pressing need for an “account of the female phenotype to better identify and help ASD females.” In her own case despite an IQ of over 150 and years of being a consultant on ASD (not to mention a parallel career as a stand-up) she still came late to a diagnosis; how much more pressing must it be for females who have felt they were different from what scientists call a neurotypical (NT) population but had never been in a position to establish why?
Forgive me, I’m still bleating on about Asperger Syndrome. To change animal metaphors: I’m a terrier with a rat, reading up about the condition, its incidence and how Aspies cope or don’t cope with it.
And — as this is a literary-leaning blog — along with fascinating AS-related non-fiction titles I’m devouring (many from Jessica Kingsley Publishers) I’m also finding that the fiction that I’m reading concurrently is taking on an added perspective when AS is taken into account.