BOOK REVIEW: A MARVELLOUS GUIDE THROUGH THE MINEFIELD – by ADAM FEINSTEIN

Autism: Educational and Therapeutic Approaches, by Efrosini Kalyva. Published by Sage, UK, 2011. 185 pages

In this magnificent book, Efrosini Kalyva - one of the leading autism authorities in Greece - guides the reader, with impressive clarity, through the minefield of the many treatments, interventions and misconceptions about autism spectrum conditions.

            Parents of autistic children can often feel so desperate to help their offspring that they will be led astray by charlatans peddling miracle  cures. There is no cure for autism. As Kalyva puts it: “The therapies that promise a cure either lack scientific background or exaggerate some effectiveness they have in dealing with some characteristics of autism spectrum disorders ...”                          

The most dangerous of these methods, in my view, are the pseudo-scientific approaches which purport to be based on genuine research findings.  I would single out the use of Lupron and chelation. Of course, there is anecdotal evidence to support the claims of effectiveness for these interventions, simply because parents are so keen to see an improvement in their child’s condition.

            Perhaps the most telling example of this is the hormone secretin, which was touted as a miracle treatment in the form of an injection and then was shown, in several studies, to be no more effective than placebo. (Never understimate the remarkable strength of the placebo effect.)

            On the other hand, Kalyva is rightly eager to emphasise that there are many promising programmes out there which have been assessed using scientifically acceptable research methods. But as she is careful to add, no single approach can successfully address all the characteristic behaviours of ASD “and it is therefore advisable to combine the most effective treatments and to adjust them to the needs of every individual with ASD in order to achieve the desired outcome.”  Parents should, the author counsels, make themselves fully aware of the advantages and disadvantages of any intervention that they chose to adopt. She advocates healthy scepticism - in parents, educationalists, therapists and mental health professionals.  I back this call wholeheartedly.

            Kalyva then moves on to the specifics. First of all, she tackles the two major  approaches to teaching autistic children - Lovaas or applied behavioural analysis (ABA) and TEACCH (Treatment and Education of Autistic and related Communication-handicapped Childeren). She does not mention the main reason why the late Ivar Lovaas’s methods came in for such vociferous criticism early on - namely, that he used electric cattle prods on the autistic children as an “aversive” (to punish inappropriate or undesirable behaviours).  She does point out, though, that Lovaas would paint the children’s nails with a bitter nail polish to discourage them from biting them. Lovaas’s 1987 study claiming that nearly half of the children had “recovered” from autism has been attacked ever since its publication. Some of Lovaas’s own colleagues have told me that he could not possibly have had adequate tools at the time to measure the children’s progress - while other critics have pointed to sample bias and other methodological shortcomings. Yet it should be emphasised that Lovaas’s message -  that autistic children could be educated - was at least a positive one when institutionalisation was still the norm.

            Kalyva herself notes that “children who receive ABA face a basic difficulty in generalising their skills, abilities and knowledge.”  In fairness, Kalyva also cites numerous studies which hove demonstrated that ABA can deal effectively with some of the symptoms of children with ASD - but only (and this is very significant), when used in combination with other effective approaches. 

            Let me declare an interest here: I like the philosophy behind TEACCH.  This is not only because I knew and greatly respected its founder, Eric Schopler, and am a good friend of his successor as director of the North Carolina-based Division TEACCH, Gary Mesibov. It is also because I identify with TEACCH’s philosophy: to work closely with the parents (Schopler set up TEACCH in the 1970s, in large part, in order to counter what he rightly saw as Bruno Bettelheim’s extremely negative, parent-blaming “refrigerator mother” hypothesis) and also because there is no attempt to expunge the autism from the child,  but rather to work with the autism, not against it. I also like TEACCH’s determination to adapt its programme to the latest research findings.

            There are illuminating insights and stimulating opinions on virtually every page of Kalyva’s book. I found particularly interesting the findings of her own studies - for example, on the effectiveness of the Circle of Friends for promoting social interaction in nursery children with ASD. And I liked Kalyva’s judicious

inclusion of questions for further discussion at the end of each chapter.

            Kalyva is correct to stress the visual strengths of many individuals with autism. Temple Grandin is, of course, well-known for “thinking in pictures” - see my in-depth interview with her elsewhere in this issue of Looking Up - and PECS (the Picture Exchange Communication System) has proven very useful for non-verbal autistic children. Indeed, PECS is the main communication system used by my own son, Johnny).  At the same time, Kalyva importantly observes that, “since some children with ASD can identify written words more easily than spoken words, it is recommended to use visual symbols with an accompanying written word printed in small letters,.” 

            In  their 1994 study, the inventors of PECS - Andy Bondy and Lori Frost - reported that 60 per cent of the children up to five years of age who used PECS for more than a year finally developed speech. More recently, however, Pat Howlin and colleagues conducted a  randomised controlled trial of PECS, in 2007, which found no increases in ADOS-G ratings, frequency of speech or language test scores.

            As Kalyva writes:  “If you use PECS supportively, you can teach a child with ASD to develop certain communicative skills - mostly to fulfil his basic needs. You can teach him to ask for an object or to carry out an activity, but it is difficult to explain to him how he can share his ideas, feelings thought or experiences, Moreover, instilling the need for communication with the environment around him is even more difficult. This may be the reason that even those children with ASD who have learnt to use PECS effectively do not usually spontaneously initiate interaction with someone else, and they depend to a large extent on the prompt from someone else in their environment ...”

            I have some very minor quibbles - which can easily be ironed out in the next edition of this magnificent volume. For example,  Bernard Rimland died in 2006, which you would not guess from the text. But these are very trivial when set against the immense qualities of this invaluable book which is a joy to read from beginning to end.  

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