Journal of Applied Research in Intellectual Disabilities 2003, 16, 169Ä…172
BOOK REVIEWS
A User Guide to the GF/CF Diet for Autism,
Asperger Syndrome and ADHD
Edited by Luke Jackson
Jessica Kingsley Publishers, London,169 pages (pbk), price UK12.95, US$17.95, ISBN1- 84310 - 055 X, 2002
There are many varied and contentious arguments put accounts of interventions along with detailed descriptions
forward for cause, control and cure of Asperger syndrome of the effects are valuable sources of information to anyone
(AS) and autistic spectrum disorders (ASDs), but the lack seeking an intervention option.
of de®nition, the absence of a concrete set of criteria along Grandin (1995) writes that people should be warned
with the heterogeneity of the conditions, present a that there is no magic cure for ASDs, and parents must be
dilemma to those involved in the provision of appropriate cautious to avoid being misled by extravagant claims
care and education. The adult individuals, who are avail- made by people who are promoting their brand of ther-
able to corroborate or dispute current theories or inter- apy. She further states that treatments that are effective
vention, are themselves examples of people who have should work with reasonable amounts of effort, a treat-
experienced many years of misunderstanding and inap- ment programme that works for one child may be useless
propriate care. The varied causal explanations put forward for another, and that treatments and educational pro-
by professionals have precipitated the production of a grammes that are effective can be implemented without
large number of interventions and therapies that are cur- spending huge sums of money. In addition, Grandin
rently available. Some of these interventions and/or thera- notes that dedicated parents and good teachers have
pies claim to effect cures, and others seek to modify made their own effective programmes after reading dif-
behaviour so that the person can adapt and become more ferent books and that they did not have to have expensive
normal. training. She recommends that a parent should follow his
This goal-orientated approach towards the desired state or her own good instincts, try different programmes or
of `normal' is somewhat alarming. Merleau-Ponty (in methods and keep the things that work and eliminate the
Crossley 1996), describes the mistake of both the intellec- things that do not work; from experience, some have
tualists and the empiricists, as that of pre-supposing what found that combining several different approaches is
they seek to explain. The `medical model' basis for under- often effective.
standing AS and ASDs pre-supposes a state of `normal' to The user guide to the GF/CF diet presents an intimate
which everyone is expected to conform in order to function view of family life through a young boy's (Luke) personal
in society. Achieving this state of normality, however, can view of the pros and cons of adopting a very strict and
involve some dubious practices. For instance, some chil- rigorous regime. The forward by Marilyn Le Breton pro-
dren who receive diagnoses are being subjected to ad hoc vides an enthusiastic and heartfelt introduction to the topic
trials of interventions, some of which are invasive, for matter, highlighting issues to which many parents or
example, drug therapy which has not been subjected to carers of individuals with ASDs or ADHD will relate very
any clinical trials to ascertain long-term safety. strongly. One of the underlying themes is that of perse-
Professional commercial marketing and parental reports verance at times when uncertainty inevitably undermines
on the ef®cacy of interventions tend to be the basis on resolve, particularly where instructions relate to tasks that
which such interventions are promoted throughout the must be undertaken over unspeci®ed periods of time with
world of ASDs and attention de®cit hyperactive disorder uncertain results. This is signi®cant, bearing in mind that
(ADHD). This situation leaves parents and carers in the the person following the diet is likely to experience
vulnerable position of having to make life-changing deci- adverse side-effects in the early stages before they start
sions on behalf of those for whom they care. Personal to bene®t. The analogy of drug withdrawal paints a
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2003 BILD Publications
170 Journal of Applied Research in Intellectual Disabilities
graphic image of the symptoms that might appear if an gluten and casein can be extremely dif®cult and expensive.
individual is sensitive to gluten and/or casein, and refer- This book shows that GF/CF food can be made tasty and
ence to Shattock's work (Shattock & Savery 1997) at the interesting, as well as convenient (see pp. 89Ä…119). The list
Autism Research Unit, Sunderland, provides an useful of UK suppliers of gluten- and casein-free products is
resource link. therefore very useful, as are the tables showing the break-
This is a well thought out and easy-to-read introduc- down of certain products, the recipes and the example of a
tory guide to a gluten- and casein-free lifestyle, offering week in Luke's dietary life.
positive and practical support to anyone thinking of Appendix 1, written by Luke's Mum, touches on some of
adopting the regime, or to anyone who has already the real issues faced by a mother of more than one child,
started. It is de®nitely user-friendly and contains nearly when considering this diet, and illustrates that the diet
everything you need to know, from how to arrange the requires a change in perception and attitude towards food
kitchen, so as not to contaminate gluten- or casein-free and lifestyles. The family, as a whole, obviously feel that
foods with products containing gluten and casein and to they have bene®ted from the complete withdrawal of
planning daily routines, both at home and away. In gluten and casein from the diets of the children with
addition, links to other information sources are listed dif®culties, whilst other members continue with their
for further investigation. Presented in a candid, humor- ordinary food intake. The message is clear, honest and
ous and endearingly personal way, the content is both sincere, with the emphasis on tolerance and accepting
informative and practical, providing advice to both par- difference. No claims are made for curing problems,
ents and professionals alike. The diet is not presented as and no offers of guaranteed success are given. Instead,
an easy intervention option, and the additional dif®cul- this book explains the process in detail, listing bene®ts and
ties that may arise in families, where not all members costs related to commencing the diet and then sustaining it.
need or wish to follow the regime, are addressed with Allowances are made for human nature, moments of
practical suggestions for reducing or preventing stressful weakness are acknowledged and strategies are offered
situations. that might support a family through the inevitable periods
The general emphasis of the book tends towards ASDs, of depression and regressive behavioural or physiological
although there is a useful amount of information on stages following deviations from the diet.
ADHD as well, such as `Tips for parents of ADHD kids' The moral of the tale advocates the acceptance of differ-
(see pp. 48Ä…49), and the Feingold diet (p. 74). The inclusion ences, along with an egalitarian approach to individual
of comorbidities such as hyper- or hypo-sensitivity, can- rights to choice. Life for Luke and his family is a contin-
dida, etc., creates a comprehensive view of the complexity uous balancing act between the needs of each individual,
and heterogeneity of the conditions, whilst raising aware- the needs of the family as a whole and the demands of
ness of frequently associated disorders. The individual society. The user guide demonstrates very nicely how a
presentation of symptoms, idiosyncrasies and attendant family can regain some form of autonomy and control over
disorders creates different issues for different families. A their lives, against what appears to most as overwhelming
frank and concise list of questions that are asked frequently odds.
provides information on a variety of topics not covered in
detail within the main text (see pp. 75Ä…78). Dawn Heather
It is easy to overlook the situation faced by many Director of Research, KBS1,
families where one or more members of the family requires Merchant House,
a special diet whilst the other members do not. The Commercial Road,
removal of gluten and casein from a person's diet creates Penryn,
a perception of extreme deprivation when compared to the Cornwall TR10 8AE, UK
national trend of consuming high levels of wheat and
processed foods. Taking this trend into consideration,
References
and combining it with the bias of UK towards dairy
produce, reveals a culture within which gluten and casein
Crossley N. (1996) Intersubjectivity. Sage, London.
consumers are the norm, and where being different creates
Grandin T. (1995) Thinking in Pictures. Vintage Books, New York.
a problem. The amount of pressure placed on the family in
Shattock P. & Savery D. (1997) Autism as a Metabolic Disorder.
this case is immense, particularly where children are con- Autism Research Unit, School of Health Sciences, University of
cerned. In addition, ®nding foods that are safely free of Sunderland.
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2003 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 16, 169Ä…172
Journal of Applied Research in Intellectual Disabilities 171
Sleep Disturbance in Children and
Adolescents with Disorders of Development:
its Signi®cance and Management
Edited by Gregory Stores & Luci Wiggs
MacKeith Press, London, v ‡ 221pages, ISBN1- 898683-247, 2002
Stores and Wiggs have produced this book as a resource The next section tackles the sleep dif®culties experi-
tool for professionals and parents who are working or enced by young people with epilepsy, cerebral palsy,
living with sleep problems. It aims to provide readers with neuromuscular problems and visual impairment. Despite
an understanding of a range of sleep dif®culties and a the methodological problems, there is strong evidence
guide to solve them. Contributors to this include physi- that people with epilepsy and sleep problems deserve
cians, academics and psychologists from a wide variety of separate attention. The most frequent sleep complaint
countries around the globe. for people with epilepsy was found to be daytime sleepi-
From the outset, the authors stress the signi®cant con- ness (61%), which is partially explained by chronic intake
tribution of disturbed sleep in social, personal, educational of antiepileptic medication. Children with epilepsy have
and occupational disadvantage. Sleep deprivation can signi®cantly higher sleep disorder and this may also be
cause impaired performance at school, changes in moods associated with disturbed daytime behaviour.
and impairment in growth. Therefore, early recognition As a practitioner working with children and young
and treatment of sleep problems is recognized as impor- people, the ®rst three sections were familiar territory;
tant to reduce these harmful effects. however, the next portion of the book proved to be a
The book begins by outlining the developmental aspects welcome addition to my knowledge about sleep disorders.
of normal sleep. A distinction is then made between sleep Although prevalence-based studies were not available,
problems and sleep disorder. Sleep problems include: the authors outline the evidence of some links between
getting to or staying asleep, sleeping too much and dis- sleep disorders and allergies. The symptoms are outlined
turbed episodes that interfere with sleep. Sleep disorders in detail. This section also discusses the effects of breath-
are classi®ed as conditions of a physiological or psycho- ing disorders, pain, medication and hospital admission
logical nature, or as combinations of both. Accurate assess- on disturbance in the sleep of children and young people.
ment of the nature of the sleep problem is outlined, as this Finally, the role of psychiatric disturbance in sleep is
is a necessary step in the effective diagnosis of sleep outlined. It is stated that there is considerable overlap
disorders. A range of sleep disorders is then described in the neuro-behavioural systems that underlie the reg-
in detail. This range is such that a more comprehensive ulation of sleep, emotion and attention. Anxiety disor-
explanation for sleep disorders is unlikely to be found ders, depression, childhood trauma, ADHD, autism
elsewhere. and CFS are all discussed in detail in relation to sleep
The next section examines the links between sleep dis- dif®culties.
order and neuro-developmental disorders such as intel- With regard to children with intellectual impairments,
lectual impairment, Down syndrome, PraderÄ…Willi severe and often persistent sleep problems occur, and
syndrome, craniofacial syndrome, mucopolysaccharido- predictably such problems can seriously affect parental
sis, Tuberous Sclerosis, Rett syndrome and other disor- health and family cohesion. The book describes the phy-
ders. This section would prove particularly useful for siology of sleep in children with intellectual impairments,
practitioners in primary care or generic services, and for and treats the quoted research ®ndings with caution
those wishing to `dip in' to the text for information on the because of the mixed aetiology and differences in severity
effects of speci®c syndromes on sleep patterns. However, of impairment in the samples studied. The picture is also
the sample sizes of the clinical groups illustrated in this confounded by the higher rates of epilepsy in children
section were small, and the practitioner should therefore with an intellectual impairment and the effect that this has
treat the results of research in this section with healthy on sleep. Links between severity of impairment, neurolo-
scepticism. gical structures and sleep phenomena are described in
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2003 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 16, 169Ä…172
172 Journal of Applied Research in Intellectual Disabilities
detail, offering practitioners a clinically rich fund of infor- patterns in children. At a service level, assessment and
mation. advice can be provided at a primary care level by health
Studies that illustrate the high prevalence of sleep pro- visitors and general practice-based psychologists. Paedia-
blems in children with intellectual impairment are tric and psychiatric services should be able to diagnose and
described. It is suggested that factors that pre-dispose this treat more dif®cult sleep disorders, preferably by working
group to sleep dif®culties include: brain abnormalities, together. Specialized sleep disorder centres, set up on a
reduced ability to learn sleep habits, lack of parental regional basis, are recommended.
discipline, comorbid emotional and behavioural problems Another useful section of this book is a framework for
and parental expectations that may expect the child not to basic training in children's sleep disorders for all profes-
sleep because it is part of their condition. Management of sionals involved in child healthcare. Subject matters
sleep problems needs to be individualized. Extinction include general issues, basic aspects of sleep and its dis-
should not be used, especially if the child has risks asso- orders, sleeplessness and its treatment, excessive sleepi-
ciated with health problems. The practitioner is also ness and its treatment and the parasomnias. As well as
advised to understand that parents may be highly sceptical detailing a useful curriculum for the training of health
to the possibility that their child's sleep patterns may professionals, the authors list core competencies required
change. to practice in a clinical setting where sleep problems are
In most chapters, advice is given for the management of presenting.
sleep dif®culties under each diagnostic category. How- Lastly, suggestions are made for future research and
ever, this book is not suitable for those practitioners seek- clinical possibilities in the ®eld of sleep management. For
ing a general overview of sleep dif®culties and their example, epidemiological studies and clinical descrip-
management. It is ideal for the specialist, providing an tions, particularly in the areas of sleep-disordered breath-
evidence base which may enable the practitioner to ing, parasomnia and children with developmental
develop methods to manage sleep disturbance/disorder disorders, all of which are neglected areas. Research for
in an impressively wide range of clinical contexts. It is not a the future is also suggested in the area of behavioural
user-friendly sleep manual for weary parents, but a com- phenotyping and subgrouping sleep disturbance accord-
prehensive account of sleep disturbance for those profes- ing to speci®c syndromes. This is because earlier studies of
sionals dealing with complex childhood disorders. sleep abnormalities in children with an intellectual impair-
The book illustrates how sleep problems deserve much ment have included groups of mixed aetiology. They
more attention because they are common in childhood, provide many suggestions for the study of sleep problems
cause signi®cant additional dif®culties in the family, with children.
exacerbate other developmental dif®culties and can be Overall, the book is comprehensive in its coverage of
accurately diagnosed and treated using existing informa- sleep disturbance in children and young people. It is an
tion. The authors argue that current professional training impressive source text when dealing with more complex
in sleep problems in children with disorders of develop- cases of sleep disturbance when there are many factors to
ment is highly inadequate resulting in patchy sleep pro- be taken into account. It is highly specialized and therefore,
blem services for children. probably, would not be a good buy for those with a more
Furthermore, they suggest that because assessment of limited interest in sleep disorders.
and advice on sleep management issues has been found to
be well received by most parents, improvements in ser- Denise Whitworth
vices are required at a variety of levels. Basic health Child & Adolescent Psychology Service,
education about sleep and well-being, antenatal classes Bryn Fynon Child & Family Clinic,
that promote good sleep habits and health promotion are Off Merthyr Road,
suggested as moves towards promoting healthy sleeping Pontypridd CF37 5TT, UK
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2003 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 16, 169Ä…172