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 UK»12.95,US$17.95,ISBN1- 84310- 055X, 2002

There are many varied and contentious arguments put
forward for cause, control and cure of Asperger syndrome
(AS) and autistic spectrum disorders (ASDs), but the lack
of de®nition, the absence of a concrete set of criteria along
with the heterogeneity of the conditions, present a
dilemma to those involved in the provision of appropriate
care and education. The adult individuals, who are avail-
able to corroborate or dispute current theories or inter-
vention, are themselves examples of people who have
experienced many years of misunderstanding and inap-
propriate care. The varied causal explanations put forward
by professionals have precipitated the production of a
large number of interventions and therapies that are cur-
rently available. Some of these interventions and/or thera-
pies claim to effect cures, and others seek to modify
behaviour so that the person can adapt and become more
normal.

This goal-orientated approach towards the desired state

of `normal' is somewhat alarming. Merleau-Ponty (in
Crossley 1996), describes the mistake of both the intellec-
tualists and the empiricists, as that of pre-supposing what
they seek to explain. The `medical model' basis for under-
standing AS and ASDs pre-supposes a state of `normal' to
which everyone is expected to conform in order to function
in society. Achieving this state of normality, however, can
involve some dubious practices. For instance, some chil-
dren who receive diagnoses are being subjected to ad hoc
trials of interventions, some of which are invasive, for
example, drug therapy which has not been subjected to
any clinical trials to ascertain long-term safety.

Professional commercial marketing and parental reports

on the ef®cacy of interventions tend to be the basis on
which such interventions are promoted throughout the
world of ASDs and attention de®cit hyperactive disorder
(ADHD). This situation leaves parents and carers in the
vulnerable position of having to make life-changing deci-
sions on behalf of those for whom they care. Personal

accounts of interventions along with detailed descriptions
of the effects are valuable sources of information to anyone
seeking an intervention option.

Grandin (1995) writes that people should be warned

that there is no magic cure for ASDs, and parents must be
cautious to avoid being misled by extravagant claims
made by people who are promoting their brand of ther-
apy. She further states that treatments that are effective
should work with reasonable amounts of effort, a treat-
ment programme that works for one child may be useless
for another, and that treatments and educational pro-
grammes that are effective can be implemented without
spending huge sums of money. In addition, Grandin
notes that dedicated parents and good teachers have
made their own effective programmes after reading dif-
ferent books and that they did not have to have expensive
training. She recommends that a parent should follow his
or her own good instincts, try different programmes or
methods and keep the things that work and eliminate the
things that do not work; from experience, some have
found that combining several different approaches is
often effective.

The user guide to the GF/CF diet presents an intimate

view of family life through a young boy's (Luke) personal
view of the pros and cons of adopting a very strict and
rigorous regime. The forward by Marilyn Le Breton pro-
vides an enthusiastic and heartfelt introduction to the topic
matter, highlighting issues to which many parents or
carers of individuals with ASDs or ADHD will relate very
strongly. One of the underlying themes is that of perse-
verance at times when uncertainty inevitably undermines
resolve, particularly where instructions relate to tasks that
must be undertaken over unspeci®ed periods of time with
uncertain results. This is signi®cant, bearing in mind that
the person following the diet is likely to experience
adverse side-effects in the early stages before they start
to bene®t. The analogy of drug withdrawal paints a

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2003 BILD Publications

graphic image of the symptoms that might appear if an
individual is sensitive to gluten and/or casein, and refer-
ence to Shattock's work (Shattock & Savery 1997) at the
Autism Research Unit, Sunderland, provides an useful
resource link.

This is a well thought out and easy-to-read introduc-

tory guide to a gluten-and casein-free lifestyle, offering
positive and practical support to anyone thinking of
adopting the regime, or to anyone who has already
started. It is de®nitely user-friendly and contains nearly
everything you need to know, from how to arrange the
kitchen, so as not to contaminate gluten-or casein-free
foods with products containing gluten and casein and to
planning daily routines, both at home and away. In
addition, links to other information sources are listed
for further investigation. Presented in a candid, humor-
ous and endearingly personal way, the content is both
informative and practical, providing advice to both par-
ents and professionals alike. The diet is not presented as
an easy intervention option, and the additional dif®cul-
ties that may arise in families, where not all members
need or wish to follow the regime, are addressed with
practical suggestions for reducing or preventing stressful
situations.

The general emphasis of the book tends towards ASDs,

although there is a useful amount of information on
ADHD as well, such as `Tips for parents of ADHD kids'
(see pp. 48±49), and the Feingold diet (p. 74). The inclusion
of comorbidities such as hyper-or hypo-sensitivity, can-
dida, etc., creates a comprehensive view of the complexity
and heterogeneity of the conditions, whilst raising aware-
ness of frequently associated disorders. The individual
presentation of symptoms, idiosyncrasies and attendant
disorders creates different issues for different families. A
frank and concise list of questions that are asked frequently
provides information on a variety of topics not covered in
detail within the main text (see pp. 75±78).

It is easy to overlook the situation faced by many

families where one or more members of the family requires
a special diet whilst the other members do not. The
removal of gluten and casein from a person's diet creates
a perception of extreme deprivation when compared to the
national trend of consuming high levels of wheat and
processed foods. Taking this trend into consideration,
and combining it with the bias of UK towards dairy
produce, reveals a culture within which gluten and casein
consumers are the norm, and where being different creates
a problem. The amount of pressure placed on the family in
this case is immense, particularly where children are con-
cerned. In addition, ®nding foods that are safely free of

gluten and casein can be extremely dif®cult and expensive.
This book shows that GF/CF food can be made tasty and
interesting, as well as convenient (see pp. 89±119). The list
of UK suppliers of gluten-and casein-free products is
therefore very useful, as are the tables showing the break-
down of certain products, the recipes and the example of a
week in Luke's dietary life.

Appendix 1, written by Luke's Mum, touches on some of

the real issues faced by a mother of more than one child,
when considering this diet, and illustrates that the diet
requires a change in perception and attitude towards food
and lifestyles. The family, as a whole, obviously feel that
they have bene®ted from the complete withdrawal of
gluten and casein from the diets of the children with
dif®culties, whilst other members continue with their
ordinary food intake. The message is clear, honest and
sincere, with the emphasis on tolerance and accepting
difference. No claims are made for curing problems,
and no offers of guaranteed success are given. Instead,
this book explains the process in detail, listing bene®ts and
costs related to commencing the diet and then sustaining it.
Allowances are made for human nature, moments of
weakness are acknowledged and strategies are offered
that might support a family through the inevitable periods
of depression and regressive behavioural or physiological
stages following deviations from the diet.

The moral of the tale advocates the acceptance of differ-

ences, along with an egalitarian approach to individual
rights to choice. Life for Luke and his family is a contin-
uous balancing act between the needs of each individual,
the needs of the family as a whole and the demands of
society. The user guide demonstrates very nicely how a
family can regain some form of autonomy and control over
their lives, against what appears to most as overwhelming
odds.

Dawn Heather

Director of Research, KBS1,

Merchant House,

Commercial Road,

Penryn,

Cornwall TR10 8AE, UK

References

Crossley N. (1996) Intersubjectivity. Sage, London.
Grandin T. (1995) Thinking in Pictures. Vintage Books, New York.
Shattock P. & Savery D. (1997) Autism as a Metabolic Disorder.

Autism Research Unit, School of Health Sciences, University of
Sunderland.

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2003 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 16, 169±172

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
tool for professionals and parents who are working or
living with sleep problems. It aims to provide readers with
an understanding of a range of sleep dif®culties and a
guide to solve them. Contributors to this include physi-
cians, academics and psychologists from a wide variety of
countries around the globe.

From the outset, the authors stress the signi®cant con-

tribution of disturbed sleep in social, personal, educational
and occupational disadvantage. Sleep deprivation can
cause impaired performance at school, changes in moods
and impairment in growth. Therefore, early recognition
and treatment of sleep problems is recognized as impor-
tant to reduce these harmful effects.

The book begins by outlining the developmental aspects

of normal sleep. A distinction is then made between sleep
problems and sleep disorder. Sleep problems include:
getting to or staying asleep, sleeping too much and dis-
turbed episodes that interfere with sleep. Sleep disorders
are classi®ed as conditions of a physiological or psycho-
logical nature, or as combinations of both. Accurate assess-
ment of the nature of the sleep problem is outlined, as this
is a necessary step in the effective diagnosis of sleep
disorders. A range of sleep disorders is then described
in detail. This range is such that a more comprehensive
explanation for sleep disorders is unlikely to be found
elsewhere.

The next section examines the links between sleep dis-

order and neuro-developmental disorders such as intel-
lectual impairment, Down syndrome, Prader±Willi
syndrome, craniofacial syndrome, mucopolysaccharido-
sis, Tuberous Sclerosis, Rett syndrome and other disor-
ders. This section would prove particularly useful for
practitioners in primary care or generic services, and for
those wishing to `dip in' to the text for information on the
effects of speci®c syndromes on sleep patterns. However,
the sample sizes of the clinical groups illustrated in this
section were small, and the practitioner should therefore
treat the results of research in this section with healthy
scepticism.

The next section tackles the sleep dif®culties experi-

enced by young people with epilepsy, cerebral palsy,
neuromuscular problems and visual impairment. Despite
the methodological problems, there is strong evidence
that people with epilepsy and sleep problems deserve
separate attention. The most frequent sleep complaint
for people with epilepsy was found to be daytime sleepi-
ness (61%), which is partially explained by chronic intake
of antiepileptic medication. Children with epilepsy have
signi®cantly higher sleep disorder and this may also be
associated with disturbed daytime behaviour.

As a practitioner working with children and young

people, the ®rst three sections were familiar territory;
however, the next portion of the book proved to be a
welcome addition to my knowledge about sleep disorders.
Although prevalence-based studies were not available,
the authors outline the evidence of some links between
sleep disorders and allergies. The symptoms are outlined
in detail. This section also discusses the effects of breath-
ing disorders, pain, medication and hospital admission
on disturbance in the sleep of children and young people.
Finally, the role of psychiatric disturbance in sleep is
outlined. It is stated that there is considerable overlap
in the neuro-behavioural systems that underlie the reg-
ulation of sleep, emotion and attention. Anxiety disor-
ders, depression, childhood trauma, ADHD, autism
and CFS are all discussed in detail in relation to sleep
dif®culties.

With regard to children with intellectual impairments,

severe and often persistent sleep problems occur, and
predictably such problems can seriously affect parental
health and family cohesion. The book describes the phy-
siology of sleep in children with intellectual impairments,
and treats the quoted research ®ndings with caution
because of the mixed aetiology and differences in severity
of impairment in the samples studied. The picture is also
confounded by the higher rates of epilepsy in children
with an intellectual impairment and the effect that this has
on sleep. Links between severity of impairment, neurolo-
gical structures and sleep phenomena are described in

Journal of Applied Research in Intellectual Disabilities

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2003 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 16, 169±172

detail, offering practitioners a clinically rich fund of infor-
mation.

Studies that illustrate the high prevalence of sleep pro-

blems in children with intellectual impairment are
described. It is suggested that factors that pre-dispose this
group to sleep dif®culties include: brain abnormalities,
reduced ability to learn sleep habits, lack of parental
discipline, comorbid emotional and behavioural problems
and parental expectations that may expect the child not to
sleep because it is part of their condition. Management of
sleep problems needs to be individualized. Extinction
should not be used, especially if the child has risks asso-
ciated with health problems. The practitioner is also
advised to understand that parents may be highly sceptical
to the possibility that their child's sleep patterns may
change.

In most chapters, advice is given for the management of

sleep dif®culties under each diagnostic category. How-
ever, this book is not suitable for those practitioners seek-
ing a general overview of sleep dif®culties and their
management. It is ideal for the specialist, providing an
evidence base which may enable the practitioner to
develop methods to manage sleep disturbance/disorder
in an impressively wide range of clinical contexts. It is not a
user-friendly sleep manual for weary parents, but a com-
prehensive account of sleep disturbance for those profes-
sionals dealing with complex childhood disorders.

The book illustrates how sleep problems deserve much

more attention because they are common in childhood,
cause signi®cant additional dif®culties in the family,
exacerbate other developmental dif®culties and can be
accurately diagnosed and treated using existing informa-
tion. The authors argue that current professional training
in sleep problems in children with disorders of develop-
ment is highly inadequate resulting in patchy sleep pro-
blem services for children.

Furthermore, they suggest that because assessment of

and advice on sleep management issues has been found to
be well received by most parents, improvements in ser-
vices are required at a variety of levels. Basic health
education about sleep and well-being, antenatal classes
that promote good sleep habits and health promotion are
suggested as moves towards promoting healthy sleeping

patterns in children. At a service level, assessment and
advice can be provided at a primary care level by health
visitors and general practice-based psychologists. Paedia-
tric and psychiatric services should be able to diagnose and
treat more dif®cult sleep disorders, preferably by working
together. Specialized sleep disorder centres, set up on a
regional basis, are recommended.

Another useful section of this book is a framework for

basic training in children's sleep disorders for all profes-
sionals involved in child healthcare. Subject matters
include general issues, basic aspects of sleep and its dis-
orders, sleeplessness and its treatment, excessive sleepi-
ness and its treatment and the parasomnias. As well as
detailing a useful curriculum for the training of health
professionals, the authors list core competencies required
to practice in a clinical setting where sleep problems are
presenting.

Lastly, suggestions are made for future research and

clinical possibilities in the ®eld of sleep management. For
example, epidemiological studies and clinical descrip-
tions, particularly in the areas of sleep-disordered breath-
ing, parasomnia and children with developmental
disorders, all of which are neglected areas. Research for
the future is also suggested in the area of behavioural
phenotyping and subgrouping sleep disturbance accord-
ing to speci®c syndromes. This is because earlier studies of
sleep abnormalities in children with an intellectual impair-
ment have included groups of mixed aetiology. They
provide many suggestions for the study of sleep problems
with children.

Overall, the book is comprehensive in its coverage of

sleep disturbance in children and young people. It is an
impressive source text when dealing with more complex
cases of sleep disturbance when there are many factors to
be taken into account. It is highly specialized and therefore,
probably, would not be a good buy for those with a more
limited interest in sleep disorders.

Denise Whitworth

Child & Adolescent Psychology Service,

Bryn Fynon Child & Family Clinic,

Off Merthyr Road,

Pontypridd CF37 5TT, UK

172

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2003 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 16, 169±172