by Professor Alan and Professor Ann Clarke ...
(October 2009)
Aspies' Heroines
In the mid nineteen forties autism was accurately described. In almost the same year a very unusual group of children was identified in Vienna. These were later described as suffering from Aspergers Syndrome. Once again, many years passed and it began to be realised that Aspergers was on a continuum with autism, thus comprising autistic spectrum disorders.
In the last few decades publication in books and articles has burgeoned. Studies have been reported in many areas, ranging from self report by a few of those so affected, to behavioural techniques, to brain imagery and to psychotherapy. But this book stands alone in presenting diary-inspired reports by six mothers of very severe cases of Aspergers, plus notes by others. What emerges is a picture of many years of struggle with various authorities, who frequently misled them about their children's problems. While most had the support of husbands and parents, nevertheless friends melted away in face of the abhorrent behaviour of these innocent victims of nature. Unkind onlookers usually suggested that poor parenting was the real problem. Obtaining an accurate diagnosis, let alone a precious Statement of Educational Needs became a nightmare; so-called experts, psychiatrists, psychologists and social workers were often way off the mark and apparently blissfully ignorant.
Needless to say, the children usually had a tough time in State Schools, particularly if not accompanied by special support; they were often excluded with nowhere else to go, and the problem of finding a suitable, affordable educational facility recommenced. Local Authorities were too often obtuse, hostile or obstructive, while the mothers found themselves fighting battles on many fronts over lengthy periods, in some cases becoming almost suicidal.
Every child was, of course, unique; the only things they had in common was that their behaviour was often appalling, especially in circumstances which they perceived as threatening. These latter, as might be expected, involved, among other things, any change in their own routines, or that imposed by others. In addition, their difficulties in communicating arose from incomprehension of the feelings of others, or their body language, or their speech.
Very often parents detected something unusual in their children's behaviour during their earliest years. These suspicions would come to fruition in pre-school and especially later. Two mothers were forced to retreat into home tuition, when no progress was made in public facilities; others were ultimately (and ultimately is a short word for a long time) exposed to serial changes, exclusions and repeat performances of hopeless placements. However, one child, coming from a family with another Asperger and a normal sibling, kept up more or less with his age peers and graduated to college for students with special needs; employment is hoped for in this case.
It will have been noted that this is a startling book in which very few professionals emerge unscathed. Of course, the majority of Aspergers are much less impaired than these extreme cases, what is more, it is unlikely that any society will be in a position to offer the individual support during waking hours that the most damaged individuals seem to require. The greatest advantage in these cases came from private, rather than public facilities, presumably a reflection of small groups and an optimal staff/student ratio.
This book is an easy read, compulsively so for these reviewers, and is to be highly commended.
Alan and Ann Clarke
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