Book Reviews

Speaking Up, Speaking Out: Pathways toSelf Advocacy Practical Guide andHandbook

Communication Matters

1999

pp. 25 (Practical Guide)þ 61 (Handbook)

ISBN: 1-898-52701-6, £30.00 (hbk/pbk, inc. P&P)

Communication Matters have produced a handbook and

practical guide to enable advocates and anyone working

with people who have severe communication differences

to support that person in developing their self-advocacy

skills.

Speaking Up, Speaking Out introduces advocacy and why

it is needed for people with severe communication differ-

ences, and the book also explores barriers to self-expression

for these individuals. Communication Matters identify the

challenges of being an advocate and how communication is a

primary consideration when meeting these problems. The

strength of the book is in the chapters on augmentative

and alternative communication (AAC). These are ‘methods

of communicating that can replace or be added to the ordin-

ary methods of speech and writing where these are impaired

. . . [and] can help someone to do more in their life, by

providing him/her with a greater level of independence’.

Communication Matters consider different strategies to

enable effective communication and to develop your AAC

partner’s self-advocacy. Speaking Up, Speaking Out explores

the role of the advocate, the ethical issues of being an

advocate, and the support an advocate needs when addres-

sing various personal and professional conflicts. Each chap-

ter concludes with case studies to consider. At the end of the

book, worksheets are provided to create a personal advocacy

plan.

The accompanying practical guide can be used as an

introduction to the issues explored in detail in the handbook

or as materials for a training course for advocates, or can be

worked through with the AAC user.

Supporting people who have greater communication dif-

ferences from a rights-led approach is an area that needs

exploration and thought. However, inclusion and self-advo-

cacy sit very uncomfortably with the advocate’s role devel-

oped by Communication Matters. Designing an action plan,

assessing a person’s personal skills and recording self-

expression professionalize the advocate, giving her or him

the role of teacher and social worker.

Speaking Up, Speaking Out becomes very one dimensional

because it fails to consider other aspects of advocacy, such as

valuing a person’s gifts and diversity, and focuses upon the

challenges and conflicts without acknowledging what a

privilege it is to be an advocate. The advocate’s effectiveness

is seen as dependent upon the individual’s impairment and

ability to communicate, and is not balanced by including the

role of society in disabling a person’s capacity to commu-

nicate or make choices.

This book is a useful aid for staff and other professionals

who work closely with people who have greater commu-

nication differences. The strength of the book is its explana-

tion of AAC.

Gwen Faulkner

Wyre Forest Self Advocacy

A Right Result? Advocacy, Justice andEmpowerment

Rick Henderson and Mike Pochin

London

Policy Press, 2001

pp. 165

ISBN 1-861-34-306-X

Advocacy is a topical subject. The espousal of advocacy as a

key plank in the ‘Valuing People’ White Paper and the

advent of some modest central government funding for

advocacy in England has raised the temperature in what

has always been a hotly contested area. The introduction of

Patient Advocacy and Liaison Services (PALS) into the

National Health Service and proposals for a right to advo-

cacy for people detained under mental health legislation has

thrust advocacy to the top of the policy agenda well beyond

134 # 2002 BILD Publications, British Journal of Learning Disabilities, 30, 134–138

the territory of learning disability. Arguments over whether

advocacy is the prerogative of volunteers or is best dealt with

by paid professionals, over whether it can flourish when

funded by the very services that might be the root of the

person’s problems, and over the introduction of training,

quality standards and formal evaluation tools have gained

even greater significance since advocacy has become so

fashionable.

This book represents one of the best attempts I know to

take the heat out of the debates by reasoned argument

alongside a genuine and convincing commitment to advo-

cacy as a means by which people who lack influence and

know-how can have their rights guarded and upheld.

Although quite a detailed read, it is a book to be thoroughly

recommended to all involved in advocacy, and many who

need to know about advocacy – such as human service

practitioners and teachers – would benefit from dipping into

it. Summary boxes and a very carefully structured conclusion

help those who want a speed read.

The authors draw a useful distinction between personal

advocacy, ‘rooted in one person’s natural capacity for

identification with another’ (p. 145), and ‘technical ad-

vocacy . . . based on an agreement that the advocate will pur-

sue the partner’s wishes’ (p. 145). They appear to associate

the former with volunteers and longer-term relationships,

and the latter with paid workers whose commitment to the

advocacy partner is essentially short-term and issue-based.

They see a place for both, and argue that the two are

interdependent.

There is careful consideration of the major controversies

in advocacy, usefully summarized in chapter headings –

‘Problems in measuring advocacy outcomes’, ‘What is

advocacy for?’, ‘Developing an advocacy culture’, ‘Looking

at standards’, ‘Learning, skills and validation’. The authors

take a measured approach to these discussions, on the

whole favouring a move to training and accountability for

advocates and to formal standards and evaluation tools

for advocacy schemes. This does not in any way dilute a

passion for advocacy as a means of transforming society

through the generous commitment of ordinary people to

the individual wellbeing of their disadvantaged fellow

citizens.

I will end this review with some personal observations.

The first is that as someone who has found the zeal of

some committed to a particular form of advocacy some-

what disconcerting, the book did a lot to reconcile me to

its principles. The second is that it reminded me of the time

I became a volunteer counsellor, when similar arguments

about the rights and wrongs of short-term contracts vs.

long-term, open-ended commitments to clients, alongside

standards and accountability, were being debated passio-

nately. These have, at least to some extent, been resolved

in the voluntary counselling context. I look forward to a

time when more energy is poured into pursuing the

fundamentals of advocacy, and less into the pros and

cons of particular forms. This book may well hasten that

outcome.

Jan Walmsley

School of Health and Social Welfare

The Open University

Milton Keynes

Living with Autism – Learning to Manage

Confederation of Service Providers for People with

Autism (COSPPA)

7 Bevan Drive, Alva FK12 5PD, UK

£49.95þ £5.00 P&P

This pack includes nine separate A4 pamphlets which have

been specifically designed for the parents and carers of

children with autistic spectrum disorder. Each pamphlet

tackles an issue of family life, and how to work with an

autistic child to improve their life experience and that of the

whole family. The nine pamphlets by various professionals

cover the following areas: (1) Learning to Manage; (2) Learning

to Live as a Family; (3) Learning to Use the Toilet; (4) Learning to

Eat and Drink; (5) Learning to Sleep; (6) Learning to Be Clean; (7)

Learning to Dress; (8) Learning to Play; and (9) Learning to Go

Out.

The material is written in a very accessible style, stressing

that there is no mystique about the methods which profes-

sionals may use (e.g. ABC or STAR charts), and that these are

tools which parents can and should make full use of. The

opening book on Learning to Manage emphasizes that the

individuality of children with autism must be recognized

and that parents will know their own child best. The authors

stress that the identification of problems and ways of tackling

them are one side of working with a child with autism, but

also that being positive and proactive in the identification of

skills which are desired and ways in which to achieve those

skills is also crucial.

The words ‘patience and consistency’ are referred to again

and again in connection with dealing with difficulties and

teaching new skills. The authors state that children with

autism can and do learn, but that this process may take

longer than parents will have been used to with other sib-

lings. They also point out that:

‘Ordinary children seem to know when they have tested

the patience of a parent too far. This will not be so with

your child with autism.’

Each pamphlet covers its topic in a similar way by looking

at the problems and suggesting ideas for tackling them, as

well as discussing skills which parents might want their child

to learn and how to go about it. Together, these booklets

create what I believe to be a very useful tool for parents,

Book Reviews 135

# 2002 BILD Publications, British Journal of Learning Disabilities, 30, 134–138

carers and many people who work with children with

autism.

The one weakness that I identified is in Learning to Play.

This is the shortest pamphlet, but play is a very important

area for young children and often one which poses great

difficulties for the child who is autistic. Having said that, I

would thoroughly recommend the pack because it is well

laid out and easy to read. I think situations where perhaps

parents and professionals are working together would be

where it would be most useful. The authors try very hard to

be supportive of parents, and remind them to reward them-

selves and recognize how much they have achieved. Never-

theless, parenting can be very hard work with any child, and

if your child is autistic, some additional support would be

very helpful in trying to maintain the levels of patience and

consistency which are referred to in this most useful pub-

lication.

Sue Hatton

Helping People with A Learning DisabilityExplore Relationships

Eve Jackson and Neil Jackson, illustrated by Tim Baker

London

Jessica Kingsley

1999

pp. 92

ISBN 1-85302-688-3, £12.95 (pbk)

Following on from Helping People with Learning Disabilities

Explore Choice, this book continues the story of five people

who live in a group home. It is designed for people with

learning disabilities to read alone or with carers. The book is

in two parts. The first includes an introduction to the char-

acters and then gives individual stories about relationships.

Large print and a small number of illustrations are used to

increase the accessibility of these chapters. The second part is

for supporters. It provides prompts for discussions related to

the issues raised in each of the chapters. It seems strange to

combine these two elements in the same volume, particularly

because the second part makes the assumption that ‘you’ are

a carer and ‘they’ are people with learning disabilities.

Similarly, the title is unwelcoming for people with learning

disabilities.

The subjects covered include jealousy, bereavement, bul-

lying, boyfriends and girlfriends, and boundaries in the

relationships between staff and people with learning dis-

abilities. It is more likely to be useful in supporting relation-

ship work than as a good read! I did try out one or two of the

stories with people with learning disabilities who had the

skills to read them alone. It took some guidance to help them

identify the aspects of the stories that were more important to

the authors. For example, there was more concern for Daisy

the cat who had been shut in a bedroom all day than the

housemates who had fallen out because of jealousy.

As a relationship education tool, the book could be, as is

suggested, a useful basis for drama and discussions. As such,

I was disappointed that there was an assumption of hetero-

sexuality. Another concern is that the material feels young,

particularly in relation to the ages of people who are likely to

be living in group home settings.

David Thompson

Foundation for People with Learning Disabilities

London

Life Behind Glass; A Personal Account ofAutistic Spectrum Disorder

Wendy Lawson Lismore

Lismore, NSW, Australia

Southern Cross University Press

1998

pp. 118

ISBN: 1-875-85531-9, £14.95 (pbk)

This book is easy to read and offers a good insight into one

person’s experience of having Asperger syndrome. Wendy

Lawson Lismore was diagnosed late in life, at the age of 42.

She recalls that she felt different as a child and had difficul-

ties fitting in, but never knew why. She also tells of her

experience of being misdiagnosed as schizophrenic, which

resulted in some spells of institutionalization and medica-

tion. Wendy describes something of her experience of family

life, first as a child, and later, as a mother and wife. It is

interesting to hear how full a life Wendy has led in spite of

her condition, and one can’t help but wonder whether this

would have been any different if she had been given the

appropriate diagnosis as a child.

The text is written from Wendy’s perspective and deals

primarily with her experiences of certain situations. Whilst

offering an excellent insight, it is sometimes frustrating

that a wider picture is not painted. However, Wendy does

explain in detail that the nature of her condition does tend

to make her egocentric and not very in touch with the

needs of others. Life Behind Glass reads as you can imagine

Wendy to be thinking. The book is interesting and easy to

read, being contained in short passages and short chapters,

and it is easy to pick up and put down during short tea

breaks.

Life Behind Glass would be useful reading for anyone who

wants to gain a better insight into how Asperger syndrome

affects a person’s experiences of life. It could be read by

parents, teachers, healthcare workers and students.

Louise Williams

Southampton

# 2002 BILD Publications, British Journal of Learning Disabilities, 30, 134–138

136 Book Reviews

Hallas’ The Care of People with IntellectualDisabilities, Ninth Edition

Edited by W. Fraser, D. Sines and M. Kerr

Oxford

Butterworth-Heinemann

1997

ISBN 0-750-62653-4, £22.50 (pbk)

This is the ninth edition of a book first published 40 years ago

as ‘The Care and Training of the Mentally Subnormal’ which

was originally intended as a manual for professional and

family carers. The present edition comprises 27 short essays,

the majority of which have been written by academics and

practitioners in Wales, Scotland and Northern Ireland. Some

essays summarize the work of individual professions, while

others focus on particular types of treatment or the organiza-

tion of services.

Most provide useful introductions, particularly the excel-

lent contribution by Roy McConkey on community integra-

tion, but a few of the essays are general academic discussions

which make only passing reference to people with an intel-

lectual disability. For instance, Owen Barr’s essay on com-

munity support teams is a good introduction to the literature

on inter-disciplinary collaboration in community care, but

says little about community learning disability teams as

such. The essay by Ray Jaques on families and disability

contains some good material which aims to correct the over-

simplified grief model, but mainly comprises a presentation

of conceptual approaches to understanding family function.

Some other essays are excellent but incomplete. The con-

tribution by Jose Jancar on ageing (mysteriously consigned

by the editors to a section of the book entitled ‘Special issues’)

is a very useful summary of the epidemiology of physical

and mental disorders among old people with an intellectual

disability, but makes only passing mention of what pattern of

care is most appropriate for this group.

As a whole, the book has little to say on the ethics of

treatment, feeding problems, transition arrangements from

school to adult life or the role of the education system. The

essays on services and legislation usually assume that Eng-

lish law applies to the UK as a whole, and there is little

reference to what we can learn from the rest of the world.

Some of these problems seem to arise from too light an

editorial touch. The essays are arranged almost at random

and the editors make no attempt to present an integrated

overview. As a result, the ninth edition of ‘Hallas’ The Care

of People with Intellectual Disabilities’ presents no clear

picture of how people with an intellectual disability lead

their lives or how the services on which they depend can be

organized more effectively.

Dr Stuart Cumella

Department of Psychiatry, University of Birmingham

Asperger’s Syndrome: A Guide for Parentsand Professionals

Tony Attwood

London

Jessica Kingsley

1998

pp. 224

ISBN: 1-85302-577-1, £12.95 (pbk)

This straight-forwardly written book will help the parents,

and many professionals working with, people with Asper-

ger’s syndrome. It sets out to assist in the identification of the

syndrome and in treatment, and should succeed in both

aims, being clearly written and structured. However, it does

not over-simplify. For example, the first chapter, on diag-

nosis, outlines different sets of criteria as well as suggesting

why Atwood prefers one of these. The following chapters –

on social behaviour, language, interests and routine, motor

clumsiness, cognition, and sensory sensitivity – detail

numerous practical strategies and tactics, and each chapter

is summarized. The chapter on ‘Frequently asked questions’

answered so many questions so well that I wished it were

longer. These answers will inform professionals whose client

groups include people with Asperger’s syndrome but who

are not specialists in the field, and even specialists may be

glad to refer family members to such a clear source. The

appendices refer to useful resource material including rele-

vant websites.

The style of the book is informal and readable, yet by

using abundant case material and other examples, it

provides very specific suggestions and information. The

teaching methods and materials suggested are access-

ible and largely drawn from ordinary life situations (I

particularly liked the suggestion that social reasoning skills

could be illustrated using the television programme Third

Rock from the Sun). The book is informed directly by

Atwood’s contacts with people with Asperger’s syndrome:

he also draws extensively on previous published work

about as well as by this group. Some quotations are very

long, but are all to the point. One reference not given was

Sack’s (1995) account of his conversations with Temple

Grandin, whose work Attwood does cite. That title – An

Anthropologist on Mars – sums up a range of experiences, the

implications of which for people with Asperger’s syndrome

and those working with them Attwood sets out in this

thorough, clear and up-to-date book. Best of all, the book

conveys a sense of what the world may seem like to people

with Asperger’s syndrome and links this to how they act.

Attwood writes positively about people with Asperger’s

syndrome and this reader was persuaded that this is how he

feels.

Alistair Smith

# 2002 BILD Publications, British Journal of Learning Disabilities, 30, 134–138

Book Reviews 137

Reference

Sacks O. (1995) An Anthropologist on Mars. London, Picador.

Behavioural Interventions: Principles,Models, and Practices

Edited by J. R. Scotti and L. H. Meyer

Baltimore, MD

Paul H Brookes Publishing Co.

1999

pp. xvii þ490

ISBN: 1-55766-294-0, £37.00 (hbk)

Behavioural Interventions is offered as an encyclopaedic

volume of revolutionary behavioural intervention strategies

which actually work. The contributors discuss a range of

behavioural interventions which have been applied to a

diversity of groups, such as people with developmental

disabilities, sex offenders, people with psychiatric disorders

and individuals involved in gangs. The opening dedication –

or epitaph – is to two gentlemen who, it is stated, died partly

as a result of the system failing to meet their needs. This

timely reminder brings home the enormous responsibility

that is placed on professionals and services to meet the needs

of the people whom they serve. The book is broken down into

four major sections.

The first section contains four chapters and is concerned

with ‘Context and Characteristics’. It provides useful infor-

mation on the history of behavioural intervention, contem-

porary practice issues and future directions.

Section 2 contains eight chapters and is concerned with

‘Models for Practice’. There is wide coverage of topics

including biobehavioural treatment, behavioural deficits

in children, aggression replacement training, sexually pro-

blematic behaviour and architectural design in positive

behavioural support. The chapter on architectural design

provides some interesting views on the impact of environ-

mental variables on challenging behaviour.

The third section contains eight chapters and explores a

series of behavioural interventions based on individual case

studies. The interventions address such areas as creating

multiple support packages, communication support

packages, community behavioural support packages, edu-

cative interventions and a person-centred approach to an

abused adolescent. This section also provides some carefully

considered approaches to people who have suffered because

of service failures and family abuse.

Finally, Section 4 contains four chapters and is titled

‘Issues and Future Directions’. It explores issues such as

cultural contexts, application of research and staff develop-

ment, and offers a personal perspective on behavioural

support. The latter perspective is most enlightening and

highlights the need for true friendships.

Behavioural Interventions is aptly described as an encyclo-

paedic volume because it provides the reader with an over-

view of behavioural interventions applied to a variety of

situations and individuals. The claim by the authors that the

interventions which they describe are revolutionary is rather

debatable since these seem to be tried and tested behavioural

approaches applied with some humanistic considerations

within a North American context. There is some repetition

between chapters, and some pertinent issues such as advocacy

andempowermentareconsideredonarathersuperficial level. I

would recommend this book for professionals interested in

applied behavioural interventions and approaches.

Robert Jenkins

University of Glamorgan

Development and Disabilities: Intellectual,Sensory and Motor Impairments

By R. M. Hodapp

Cambridge

Cambridge University Press

1998

pp. xivþ 270

ISBN: 0-52148-294-1, £37.50 (hbk)

0-52148-338-7, £13.95 (pbk)

Sadly, it is both a rarity and a pleasure to pick up a clinical

textbook by a US author which usefully covers material from

both American and European sources. This small point in

itself should commend Hodapp’s book to a British reader-

ship because it provides a reasonable transatlantic spread in

its coverage of clinical material.

This is a useful general volume, dealing with a wide

subject area in a brief format. The topic is ‘multidisability’

development, and the book aims to discuss development in

children with global learning disabilities, deafness, blindness

or motor impairments.

An initial reading of the dust-jacket blurb and the contents

listing might mislead the casual reader into thinking that the

topic is specifically multiple sensory and developmental

handicaps. The remit of the book is wider than this and it

would usefully form part of a core syllabus for courses in the

general area of developmental aspects of disability.

As a brief general introduction to the area of disabilities

and development, this book provides a simple, reasonably

up-to-date text that is both easily read and well referenced. It

would be a useful addition to libraries in developmental

assessment centres, and in child psychology and neurology

departments as basic orientation material for trainees.

Ken Aitken

Child and Adolescent Neuropsychologist

(Learning Disability)

# 2002 BILD Publications, British Journal of Learning Disabilities, 30, 134–138

138 Book Reviews