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Editors: Helen Cockerill, Lesley Carroll-Few
pp 185 Price £45 ISBN 1-898-68325-5 (h/b)
London: Mac Keith Press.
Many of the troubles that we associate with the ‘terrible twos’ probably arise from the limited ability of toddlers to make themselves understood. This frustration will persist and become magnified in children whose speech fails to develop. What can be done to help? Acquisition of conventional language and production of intelligible speech are hugely complex tasks that are unattainable for certain children. In some (such as those with athetoid cerebral palsy, articulatory dyspraxia, or inadequate respiratory reserve) there is difficulty with voice production. In others (including those with specific language disorders, or severe global developmental delay) the problem involves inner language too. Parents often find it difficult to accept that their child will never speak effectively, so spend their energies on encouraging ordinary speech rather than teaching alternative methods of communication that are likely to be much more accessible for their child.
Anywhere in the world we could make the gesture of bringing an invisible cup to our lips with a reasonable hope that we would be understood. Simple gestures such as this are much more readily and universally understood than our ‘native’ tongue. Gestures can be understood—and copied—by even very young children, and those with poor fine-motor control. Augmentative and alternative communication (AAC) includes gesture and signing, and the use of pictures and symbol charts. Electronic voice synthesizers are also forms of AAC, but ordinary writing and typing are not.
The first two chapters of Communicating without Speech deal with the neurology of speech and language disorders. There are several photographs and diagrams of the brain, mostly borrowed from old anatomy textbooks (and many not actually demonstrating what the new captions suggest). There are some new pictures; one of these added to my confusion by labelling Broca's area as Wernicke's area and vice versa. Though the pictures are poor—disappointing in a book about alternatives to the spoken and written word—the text is clear and encourages precision in diagnosis. The authors state that there has been a recent tendency to include children with a variety of different language impairments under the umbrella of ‘autistic spectrum disorders’. They suggest that the much-publicized increase in the diagnosis of autism is the result of such lumping.
The book moves on to discuss the practicalities of introducing AAC, and tailoring the method to patient, family and school. The many barriers to its acceptance and practice are described. Parents may say ‘we already understand each other perfectly well’, or fear that AAC might inhibit normal speech development (in studies that have shown a difference, the opposite is true). The AAC methods should be introduced as early as possible; speech disorders are so common in certain chromosomal and dysmorphic syndromes that the methods can even be started before the problems become apparent. Sad to say, in many cases there is insufficient funding for the ideal of an expert multidisciplinary assessment (by a specialized speech therapist, a physiotherapist, an occupational therapist, a psychologist and a teacher).
If the low-tech AAC devices do not help, the high-tech ones will not either. Parents often have great hopes for the various types of voice synthesizer, but these tend to be useful only for individuals with normal language comprehension and impaired voice production. Assessment of comprehension and intelligence in multiply handicapped children is extremely difficult; in the future, functional MRI or positron emission tomography may reduce much fruitless trial and error.
One of the chapters consists of a series of personal accounts about AAC aids written by children, their parents and their therapists. David, a child with cerebral palsy who has a Cameleon voice synthesizing computer attached to his electric wheelchair, writes:
‘The only slight problem is that it takes eight seconds to get into speech mode from driving. So, when I drive up to people they must give me time to get into speech mode... switches are another problem... I've tried accessing them with my hands, head, or anything else... if I can't apply enough pressure or if they can't be sited in the right place for me to access, they have to go... the best switches are no good without the right computer, and that's no good without the right software, and none of it is any good without the right teacher... I've got about eighty-eight pages on my Cameleon at present. A lot of them are useful and have pre-programmed sentences—the sort of things I use a lot—about food, things I want to do, places I need to go... I've got a social page that's useful when I meet new people... it's much easier to have a whole page for some topics... if I were to build the sentence “can we go to town this Saturday” it would mean using my head switch sixty-two times... that's hard work and takes a long time... if I say “town Saturday” it is much quicker and only takes nineteen switch movements... I do get mad when people don't give me time, and when they think they know what I was going to say. How can they?... Lastly, please don't “talk down” to us. We are not simple... and physically don't talk down to us either. You all talk face to face, with eye contact and facial expression... if we're in a wheelchair sit down, or at least come to our level’. The public's knowledge of the Cambridge astrophysicist Stephen Hawking should have dispelled the belief that users of voice synthesizers are simple, but most people don't realize that Hawking's apparently spontaneous and fluent speeches have taken several days of computer preprogramming, and that the television companies edit out the long silences before he answers audience questions.
The final chapter describes the various AAC resources available, including sign languages, sign systems, graphic symbol systems and sets, and the electronic voice-output devices. Readers who are unfamiliar with all these should probably read this chapter first.
I liked the book. On the ward this week, we have a boy with quadriplegic cerebral palsy, learning difficulties and epilepsy. He can't speak; his only means of expression is crying, which he did for eight hours yesterday. The nurses thought he was in pain and were keen for the doctors to prescribe something—perhaps a laxative, an antacid or a muscle relaxant. His mother said that he simply doesn't like hospitals. If only he could tell us what is bothering him so much. With the right help, perhaps he eventually will be able to.