By Peter Vermeulen
Jessica Kingsley pound;15.95
nbsp;An infant who prefers to look at the wall while being breastfed. A three-year-old who knows all the words of the Catholic Mass, but spends much of his time chewing the corner of a coffee table. A 15-year-old whose main interest is twirling pieces of cloth and who has no spoken language. Autism is a modern enigma.
It is easy to understand why some parents of autistic children hope for a miracle cure and why some “experts” hold out the promise of “recovery”. But autism is not a disease affecting an otherwise ordinary individual, nor is it a shell with someone trapped inside. These texts contribute significantly to an understanding of what autism means and what intervention can achieve.
Pervasive Developmental Disorder is an American book that uses its own terminology to describe the autistic spectrum, although the core triad of difficulties associated with autism - poor social interaction and communication and inflexible thinking - is familiar territory.
Writing mainly for parents, the authors provide realistic and practical information, richly brought to life by the stories of families in which even the simplest of events (such as going shopping or cutting hair) is frighteningly complex.
The theme that runs through this survey of play, language and social reciprocity is that autistic individuals have a unique world view. No form of intervention, no matter how intensively pursued, can or should change this altered perspective.
Sensibly, these authors put parents at the helm of decision-making, and they describe a wide range of educational opportunities that can enable autistic individuals to function more effectively in the family, at school or at work, including nbsp; techniques based on behaviour modification.
It explains components of programmes such as the picture exchange communication system (PECS), applied behavioural analysis (ABA) and TEACCH. “Different methods work for different children,” they write, displaying a pragmatism that is the real strength of this excellent guide.
I was intensely moved by Kate Rankin’s account of life with her son Gabriel, whose “toys” include fluorescent tape, rubber gloves, keyrings and laces. At 15, he is incontinent, has violent mood swings, has no speech, bangs his head, shows no spontaneous affection and demands constant attention.
There is a sad resignation in the grim humour of the writing (“More life and times on Planet Autism”) which punctuates the sheer desperation and turmoil. It is not surprising that parents feel largely unsupported and patronised by professionals, and express total commitment to ways of coping that work for them. But this is not a text about educational interventions. It is a story of human endurance, loyalty, frustration and acceptance. It raises some of the most poignant questions about quality of life with (and around) autism, and how individuals with an “altered perspective” think or feel.
The final text, written for a professional audience, takes up the challenge of explaining autism to people with the condition (“get to know yourself and your autism”). Presented as a workbook of exercises, the activities focus on the insides and outsides of bodies, people’s strong points, preferences and differences, how brains work and contrasting kinds of intelligence, leading on to disability and the consequences of autism.
The paradox here is that to work through this process, participants would need to be capable of thinking reflectively about themselves, be able to communicate interactively in a group, read the factsheets and write their responses - skills that take in most of the triad of impairments associated with autism. Well intentioned and politically correct ( “people with autism are not inferior but special”) the material signals an important shift - promoting self-awareness, rather than imposing a “normal” perspective - but I doubt that any of this would be useful to Gabriel Rankin.
Alec Webster is professor of educational psychology at the Graduate School of Education, University of Bristol
