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Tizard Learning Disability Review

Person-centred approaches to supporting children and adults with autism spectrum disorders
Julie Beadle-Brown Rachel Roberts Richard Mills
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Feature

Person-centred approaches
to supporting children
and adults with autism
spectrum disorders
Julie Beadle-Brown
Tizard Centre, University of Kent
Rachel Roberts
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Parent
Richard Mills
Director of Research, National Autistic Society

Abstract
The editorial for this issue sets out the context of increasing awareness of the need for better services for children
and adults with autism spectrum disorders, and highlights the importance of policy to maintain awareness and
provide incentives while recognising that more would be needed to ensure that people with autism have a good
quality of life and reach their full potential. There are two sections to this paper. The first is a case study written
from a parent’s perspective and highlighting the need for good joint working and supporting families, as well as
the importance of understanding how autism affects a child and his/her family. The second part considers good
practice in supporting children and adults with autism to increase social inclusion, independence, choice and
autonomy.

Key words
autism; person-centered approaches; SPELL framework

Introduction Peasey kotick penguins, and equal


Changes in Early Years provision such as the partners: a parent perspective
introduction of the Team around the Child (TAC)
were intended to improve the experience of children Equal: 1) the same in quantity, quality, size,
and families, in particular during statementing and degree, rank, level etc; 2) evenly balanced (an
transition. The approach is based on having a small equal contest); 3) having the same rights or status
group of people who know the child and the family (human beings are essentially equal); 4) uniform in
and work together with the family to organise application or effect (equal opportunities). (Concise
appropriate support for the child. When it works well, Oxford English Dictionary)
it achieves these aims but sometimes, as with any
person-centred planning process, the experience can This case study outlines the experiences we, as a
vary over time, as illustrated in the case study below. family, have been through in the last seven years.

18 Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd
Person-centred approaches to supporting children and adults with autism spectrum disorders

If you were to meet us in the street, you might working with and sometimes challenging the practices
perceive us a normal family of four, or more likely and processes we have come across. Primarily this
as a family with an unruly ‘attention seeking’ nine has been to access something basic: a full-time
year old ‘who should have outgrown tantrums by education for Thomas.
now’. We have a child who is normal but behaves While these idiosyncrasies of behaviour, expression
differently and perceives the world in a very and understanding relate to Thomas, we have
interesting way. I will call him ‘Thomas’. often found ourselves in situations which mirror his
At the moment, Thomas is very interested in bafflement with language, especially when trying to
words, and their precise definitions. He is both understand the terminology used by professionals
fascinated and frustrated by the way language to describe and discuss Thomas’s needs. The main
works, the way words can be bent to fit meanings idiosyncrasy stems from having a child with complex
which don’t always match the given definition, the and serious special needs who is also extremely able
conventional usages which often defy his logic. Above in specific areas. Thomas fits into the criteria outlined
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all, it is the sound of words which often makes no in the Special Education Code of Practice (Sencop),
sense to him. His speech therapist describes his use but he fails to match conventional ideas of either a
and understanding of language as ‘idiosyncratic’. ‘disabled’ child or a ‘normal’ child. A preoccupation
For instance, he wants to know ‘Why are the penguins with terminology often sidetracks attention away from
peasey koticks? What does it mean? What is a provision, accessibility and equality, which are at the
peasy kotick?’. I understand the questions but I have core of both the DDA and the Sencop. I will clarify
difficulty defining and explaining the answers. These what I mean by professions. My OED gives:
idiosyncratic black and white birds have long held a
fascination for him, but this is a new set of questions. Profession… 1) a vocation or calling esp. one that
This recent ability to question and engage in dialogue involves some branch of advanced learning or
is remarkable in its own right. Differing definitions science [the medical profession].
and the origin of words often provide the clues to
shape his understanding. As parents, we have dealt This raises key points about levels of expertise
with the many idiosyncrasies that stem from having a and competence from which expectations about
child who doesn’t fit into any single, neat stereotype. professional behaviour might stem. However it
Idiosyncrasy is a useful word to use to describe our goes on:
experiences, but it may be helpful to refer to the
dictionary definition. 2) a body of people engaged in a profession
(Concise Oxford English Dictionary).
Idiosyncrasy… 1) a mental constitution, view of
feeling, or mode of behaviour peculiar to a person; Professional bodies have an important role in
2) anything highly individualized or eccentric; 3) a supporting their members, in advocacy, regulation
mode of expression peculiar to an author…. Greek and networks. They ensure that ‘advanced learning’
idiosugkrasia from idios own + sun together + remains up to date, in line with current research
krasis mixture. (Concise Oxford English Dictionary) and within the law. Parents are usually outside
these organisations, not party to the specific use of
The idiosyncratic modes of behaviour and expression language, ‘the jargon’ used within each profession.
that are central to Thomas mean that his formal and As a result, an unfortunate, often unequal, sense
informal support, at school and at home, needs to be of ‘us’ and ‘them’ can arise between professionals
equally idiosyncratic and individualised. In order to and parents. The differences can be so profound
achieve this we have often found ourselves debating, as to cause wariness between professional groups

Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd 19
Person-centred approaches to supporting children and adults with autism spectrum disorders

themselves. As parents, we have often felt that † Respect the differing needs parents themselves
there is a bizarre competition, in meetings and may have, such as a disability, or communication
correspondence, between the professions in and linguistic barriers
the use of obscuring jargon. We are constantly † Recognise the need for flexibility in the timing of
hunting down the meaning of simple words. The and structure of meetings (Chapter 2, p17).
different interpretations of ‘assessment’ by health
professionals, psychology, local education services This outline has been translated into agendas in
and social services is a case in point. Educational which agencies are encouraged to facilitate and
terms such as ‘differentiating the learning outcomes’ enable parents to become equal partners in decision
and ‘adult mediated learning environments’ have making processes, or words to that effect. This is a
often left us feeling as though we are trapped in the curiously indicative phrase, which positions parents
Hunting of the Snark. as less than equal. I suggest that the vast majority
of parents will always have a greater, a more than
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The method employed I would gladly explain, equal, interest in their children than anyone else.
While I have it so clear in my head, One of the major frustrations we have faced is in
If I had but the time and you had but the brain – having our expert knowledge of Thomas ignored or
But much remains to be said. undermined by those who are, in theory, our ‘equal
partners’. This is not to say that professionals do not
(Lewis Carroll, The Hunting of the Snark. Fit the fifth: care or are uninterested, but we carry the unequal
The beaver’s tale, verse 18) majority share of the ‘partnership’. Those of us who
ask too many questions are ‘the awkward squad’ or
This barrier between people is all the ‘over-demanding’ or – my favourite – ‘unrealistic’. It
more frustrating when the Sencop specifies would be refreshing if all those involved followed the
clarity of language and acknowledgement of Sencop advice, which reminds professionals:
parental viewpoints.
2:6 Positive attitudes to parents, user-friendly
2.7 To make communication effective professionals information and procedures and awareness of
should: support needs are important. There should be no
presumption about what parents can or cannot
† Acknowledge and draw on parental knowledge do to support their children’s learning. Stereotypic
and expertise in relation to their child views of parents are unhelpful and should be
† Focus on the children’s strengths as well as challenged. All staff should bear in mind the
areas of additional need pressures a parent may be under because of the
† Recognise the personal and emotional child’s needs (Sencop, Chapter 2, p17).
investment of parents and be aware of their
feelings The nature of such partnerships becomes all the
† Ensure that parents understand procedures, are more complex when the concerns of the parents,
aware of how to access support in preparing siblings, grandparents – indeed, the concerns of
their contributions, and are given documents well all the extended family and friends (from whom
before meetings the most immediate, practical support most often
† Respect the validity of differing perspectives and derives) – are considered.
seek constructive ways of reconciling different In my experience, there is one question which
viewpoints new professionals unfailingly ask when they meet
us and which illustrates the differences in status

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Person-centred approaches to supporting children and adults with autism spectrum disorders

between ‘professional’ and parent: ‘… and what is it strongly ‘in keeping the conversation live’, a phrase
that you do?’. Over time I am finding this question which essentially means ‘listen and talk to each
increasingly hard to answer, as the more rooted other’ and ‘keep it meaningful’. This ethos was a
I become in providing for my child’s educational key element of very successful team working. One
and other needs, the less located I am in my own group of professionals who are often closest to
professional field. As a parent, I find the question understanding equal partnerships with parents are
patronising and the need for simplistic pigeonholing the expert teaching assistants who support some
depressing. The question becomes all the more of the most complex and challenging children in the
irritating when one has answered it nearly a 100 school system.
times. The information is certainly already contained However, as time has progressed, the genuine
on page 1 of the file, if only someone would read it. working partnership has come and gone. As
In two years from the first visit to our GP, parents, we find it hard to describe the impact of
through statutory assessment for a statement of the ever-changing procession of professionals. We
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special educational needs, until Thomas started have found it exhausting keeping track, over seven
in reception, we were dealt with by an ever- years, of who is involved and what they are doing.
changing chain of more than 60 professionals. This Trying to maintain progress in a shifting tide of
number is now over 100. As a result, continuity professionals is not easy. Files get lost, or not read,
has been poor. Only our GP, the paediatrician, reports with errors are distributed, and ultimately,
two LEA case officers and a research psychologist progress is lost. The strategic inability to maintain
have remained constant. Any concept of ‘equal continuity can cause great disruption, not only for
partnership’ dissolves when so many people are parents and professionals but also, more centrally,
involved. We would not have achieved the levels of for the child. This became evident during Thomas’s
support Thomas has had to date without the legal routine move from local infant to local junior school,
underpinning of a statement of Special Educational which involved changing teaching assistants, special
Need. educational needs co-ordinator and educational
The emotionally gruelling ‘statementing’ process psychologist. Key relationships were lost, and this
took ‘only’ a year and, although it was highly proved disastrous. Thomas was terrified and lasted
stressful, Thomas got the educational support he only four days in that setting. He needed over a
requires. However, even with this detailed and year out, during which time I provided his support
considered document, it has continued to be full-time. An exhausting situation, too complex to
extremely difficult to get the recognition of what is detail here.
required and that provision put in place. Thomas is now in a very different, supportive,
Following the issue of the statement, the chain inclusive school. Though the current legislative
of 63 professionals diminished into a small group. framework demands that all schools should be
Throughout playgroup and infant school we had fully inclusive, this is, as many parents know,
a core team working in a Team Around the Child. exceedingly rare. The move to secondary school is
This team consisted of a dozen or so remarkable on the horizon, so we are entering the process all
people who did work in genuine partnership. It over again. New assessments, visits and, no doubt,
included members of staff from the settings and more ‘equal partners’. We have nearly two years of
external experts. (Expert: having special knowledge ‘transitional planning’ to get through before he even
or skill in a subject… from Latin expertus, past changes school. Thankfully, for now, we have the
participle of experiri: to try.) They prioritised ‘the support of a fully inclusive school and a new team
needs of the child’ as the starting point to making of key professionals who have taken the time to
provision work. The lead professional believed very know him.

Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd 21
Person-centred approaches to supporting children and adults with autism spectrum disorders

In the meantime, while his sister plays Simple children and adults with ASD. It is not an approach
Gifts on her fiddle, I need to explain, idiosyncratically as such, but rather a foundation on which to build
of course, what a psychosis is, why the makers of other interventions focusing on communication,
Madagascar might think penguins are psychotic and participation, education and behaviour.
why we say it the way we do when it is spelt the
way it is. Structure
There is a great deal of evidence to confirm the value
Good practice in supporting of structure in programmes for autism (Bartak &
children and adults with autism Rutter, 1968; Schopler et al, 1971; Rutler & Schopler,
The case study illustrates some of the issues faced 1978; Schopler & Olley, 1980; Rutler & Schopler,
by children and families through early years, primary 1992; Schopler et al, 1995). Structure is a major
school and times of transition. The emphasis of the element of other intervention approaches such as
case study is on legislation, co-ordination and the TEACCH (Treatment and Education of Autistic and
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importance of partnership with families. It is also related Communication Handicapped Children).


important to consider what support is needed on a It involves the use of supports such as visual
day-to-day basis – support to learn and develop, timetables, environmental management and other
support to be socially included and support to non-verbal communication aids, to make the world
become as autonomous and independent as possible. more comprehensible and predictable and thus
Since 1964 the National Autistic Society have been reduce anxiety. It is generally recognised that almost
supporting families and professionals working with all people with autism are substantially stronger
those with autism. After years of experience, and in processing visual information and in organising
building on a sound evidence base of research and their lives if information is presented in logical and
practice including feedback from people with ASD concrete ways. Even the most able individuals, with
themselves, they developed a framework which forms good language, are helped in their ability to respond
the basis of their training on autism and their provision independently by use of signs, symbols, photographs,
of services for people with autism. It is called the drawings or having tasks presented to them in
SPELL framework (Mills, 2008) and uses cognitive predictable format.
learning theory to instil five key pillars of good We all use a selection of methods to provide
practice through the simple mnemonic SPELL: structure in our own lives – diaries, calendars, work
† Structure plans and schedules, to name but a few. Individuals
† Positive approaches and expectations with autism need more attention to structure because
† Empathy they may have particular difficulty in organising
† Low arousal information instinctively, and may find it especially
† Links hard to understand the mental states and intentions of
other people. This leads directly to problems, not only
This section will consider each of these pillars in turn, in understanding spoken language but also with the
outlining definition, implementation and challenges unwritten rules implied by gesture, facial expression
for each element. Overall, the framework fits very and intonation of voice. Words may be taken literally,
neatly on the person-centred support agenda; it or an apparently good vocabulary may mask receptive
recognises the individuality of all people with autism deficits. The use of structure removes ambiguity
and highlights the importance of planning for and and helps to reduce reliance on prompts and verbal
supporting people on that basis. The framework instruction, thereby promoting independence and
aims to reduce the disabling effects of autism and, autonomy. Something as simple as a picture on a
in particular, the anxiety experienced by so many kitchen cupboard or drawer reduces the need for a

22 Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd
Person-centred approaches to supporting children and adults with autism spectrum disorders

carer to prompt an individual where to go for a plate learn and grow in independence. In essence, positive
or a spoon. Presenting choices visually to people approaches are concerned with engaging people in
also promotes their ability to understand the choices meaningful activities and relationships using a helpful
being presented. This can also apply to more able style of interaction embedded in positive attitudes and
individuals, whose ability to function in work is greatly a knowledge of the individual, using approaches such
enhanced by knowing how much work has to be as person-centred active support, total communication
done, the sequence of the work and when the work and positive behaviour support (Mansell et al, 2008;
has been completed. Beadle-Brown, 2006; Mansell et al, 2005).
Structure is not the same as rigid routine. It does Positive approaches are also about playing to
not mean that the person has to do the same thing strengths, about having high enough expectations for
every day, nor does it mean that they cannot try new people not to become bored and therefore to resort
things or that everyone has to do the same thing. to self-stimulatory or self-injurious behaviour, but not
Indeed, the NAS training materials suggest that it such high expectations that we fill people with anxiety
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is important to build change into people’s routines and lack of confidence. They are also about working
in order to encourage flexibility – but in a carefully with people to recognise and develop their strengths
managed way to avoid anxiety. One issue sometimes to achieve their maximum potential, and about valuing
met in services is that, despite professional guidance their contribution, whatever that might be.
to use visual structure and communication systems, Finally, positive approaches are about how we
staff teams decide that having pictures on the kitchen portray people with autism to others – the language
cupboards is not ‘normal’ and so they remove them. we use, the imagery we use, the places we provide
However, it is important to remember that, for for them to live, the way we present them to new
someone with autism, removing those timetables or people, the activities we offer them (age-appropriate
symbols could be as disabling as taking the wheelchair and real), and the way we support them to be a
from someone who cannot walk. valued member of their community.

Positive approaches and expectations Empathy


At a time when person-centred approaches In order to support children and adults with autism,
and respecting people’s choices are seen as very it is necessary to understand what it is like to have
important, it is good to revisit what they mean in an autism spectrum disorder, or more accurately to
practice. Mansell et al (2005) reminds us that to understand how having autism affects an individual’s
have real choice we have to have more than one life. Empathy is about respecting people’s right to
option, and experience of the options and of having be a bit different from you or me and working to
our choices respected, with support to achieve understand how they communicate, experience the
success. Teaching choice making is an essential tool world around them or feel in a given situation. It is
in enhancing communication, preventing distress and about finding ways to help them function as well as
reducing challenging behaviour. Teaching a person possible in what may seem to them an alien world.
how to request a preferred activity or to indicate Empathy is about understanding the different ways
when they wish something to stop is central to the in which people with autism experience the world.
approach. We have already spoken about the need for structure,
Positive approaches and expectations do not mean but we should try to understand that for many
allowing people to sit and do nothing or to engage in individuals the world is a confusing, often nightmarish,
self-stimulatory behaviour all the time because they place where they are bombarded with information
seem to be ‘choosing’ to do so, but supporting people that makes absolutely no sense to them. They may
to try new things safely, so they can make choices, have a particularly concrete or literal view of events

Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd 23
Person-centred approaches to supporting children and adults with autism spectrum disorders

and language that leads them to logical but socially the activity, will help them to be able to engage in
incorrect or inappropriate conclusions. This can lead activities and interactions in the future (Marvin, 1998;
to a great deal of distress or teasing and bullying. Carr & Collins, 1992; Mansell et al, 2005).
Empathy is not about acknowledging the This element of the framework is often said
difficulties someone faces and then allowing them to be the most difficult to implement, especially
to avoid any difficult situation, but supporting them in mainstream environments where most people
through those difficulties using rehearsal of potentially do not have ASD. In some environments, such as
difficult scenarios, positive approaches, expectations mainstream UK schools, the principle of low arousal
and structure. It is not about finding one ‘autism- goes against the Government’s recommendation that
friendly approach’ for all people with ASD, but the children should be stimulated as much as possible.
right approach to support each individual. Asking teachers to tone down art work or science
displays in classrooms, for example, or use alternative
Low arousal ways of displaying children’s work sometimes is
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This element of the framework applies to both the met with resistance. Although the National Autistic
environment and our interactions with an individual. It Society argues that the SPELL framework can be
is important to improve focus and concentration, but implemented in most situations and that most, if not
it is also important in reducing anxiety and managing all, children would benefit from a calm and organised
‘challenging behaviour’. Environmental manipulation is environment, research evidence to support this view
an important part of LaVigna’s framework of positive is lacking.
behaviour support (Lavigna & Willis, 1995).
We are increasingly aware that the sensory profile Links
of individuals with autism often differs markedly from The links element is focused primarily on supporting
that of the general population and that they may be integration in mainstream society through consistency
either over- or under-sensitive across the full range and continuity of approach. This is achieved by
of sensory domains (Kern et al, 2006). They may partnership with families, schools, public agencies and
be sensitive to light, sound, heat, smell and touch. so on, and it is here, often at times of transition, that
They may have problems in integrating the sensory things may go particularly badly. Those supporting
domains into a coherent whole. Their so-called people directly should not feel on their own or
challenging behaviours may be a reaction to these unsupported. They must be able to refer to others
problems, and an attempt to regulate and achieve for advice, assessment, intervention and support –
equilibrium. It is here that attention to interaction and particularly important where children and adults have
environment is crucial challenging behaviour. While the SPELL framework,
We should not confuse low arousal with no including use of person-centred approaches, goes a
arousal. Such approaches need to be person-centred; long way to producing the conditions that will reduce
what brings about a state of high arousal for one challenging behaviour, it will not replace the need for
person might not be experienced in the same way guidance and support from informed professionals.
by another. Here empathy is important; being aware This is the element of the framework with which
of how the environment affects each individual the case study presented above is largely concerned.
should dictate how best to arrange their environment. The framework maintains the importance of links
In interactions it is important to use a quiet, non- with all those involved in the lives of the child or
confrontational approach with individuals with autism. adult with autism, and with professionals who could
Giving people the opportunity to experience new support the child and the family. One would be
and potentially anxiety-provoking events or activities excused for thinking that this should be the easiest
in very small chunks, with control over the course of element to implement; it does not require autism-

24 Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd
Person-centred approaches to supporting children and adults with autism spectrum disorders

specific skills, but some understanding and acceptance of autism as a different but perfectly
empathy with the child and his or her family. valid way of being. At one local mainstream primary
However, there is substantial anecdotal evidence school where there are a number of children with
that many parents have to spend much of the life ASD, the children show an amazing acceptance and
of their child fighting to receive appropriate support integration of the children with ASD, while they
and struggling to manage the involvement of a have worked out how and when to approach or
multitude of professionals who may not agree not approach these children and when to give them
with each other. There are too many challenges for space. They also clearly value the ASD children
parents to elaborate on here, but issues such as the and help these children feel part of the class,
lack of early intervention, the ‘postcode lottery’ in supporting and recognising their achievements. In
the UK and lack of knowledge of autism in health order to help people with autism to be accepted as
and public service personnel make the job of valued members of our community, it is essential to
parents even more difficult. enable them to access the same environments and
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opportunities as their peers – but little and often –


What is needed to implement so that you increase tolerance on both sides.
good practice more widely?
Awareness and training Legislation and policy
Although this framework for good practice is Legislation and policy that have integration, choice
becoming more widespread, it is still not commonly and fulfilling potential at their core would provide
in place in schools and services apart from those incentives for these good practices to take root. In
provided or accredited by the NAS. The tendency for particular, legislation and policy can be important
local authorities and services to develop their own in ensuring consistency across locations. However,
‘bespoke’ training can result in a lack of consistency any general disability, education, health or social
of knowledge and approaches. It has been care legislation needs to mention autism specifically
recognised by government that, despite the work of and set out any special provision clearly, since it
the NAS, awareness of autism is still limited in public is an area (acknowledged by the DH, 2006) that
services such as social services, health services, crosses traditional boundaries of health, social care,
the police and mainstream education. However, as education and so on. All legislation should apply to
illustrated in places such as Jersey, it is possible people with autism, but the way in which it should
to overcome this and to train people in a range of be done is often open to interpretation or, in some
services in the SPELL framework, with beneficial cases, misinterpretation. Without this specificity,
effects. people with autism will continue to fall through the
Carers and professionals in all fields that gaps of provision and struggle to access mainstream
support people with autism in any way need a or even general disability services. One example is
good understanding of autism and of good practice. facilitating access for people with autism under the
Training that offers a clear and consistent approach Disability Discrimination Act, where an understanding
is essential. receptionist and a private (low arousal) interview
As noted in the case of Thomas, described room are needed to facilitate access to social
above, despite a legal right to inclusive education, services departments or banks, rather than a ramp
the reality at present is that this rarely happens or automatic doors.
for children with ASD. However, when it is done
well, the benefits can be tremendous. Apart from Research
the beneficial effects on the child, there are other The SPELL framework is based on substantial
important benefits in awareness, knowledge and practical experience and research into what works

Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd 25
Person-centred approaches to supporting children and adults with autism spectrum disorders

for children and adults with autism, and has received Kern JK, Trividi MH, Garver CR et al (2006) The pattern of
sensory processing abnormalities in autism. Autism 10 (5)
a positive evaluation in the only published critique 480–96.
(Tutt et al, 2006). Each of the elements of the
LaVigna GW & Willis TJ (1995) Challenging behavior: a model
framework has a strong evidence base, but the effect for breaking the barriers to social and community integration.
of the implementation of the framework as a whole Positive Practices 1 (1) 1–14.

has not been evaluated. Research on elements such Mansell J, Beadle-Brown J, Ashman B & Ockendon J (2005)
Person-Centred Active Support: A multi-media training resource
as active support has included people with autism for staff to enable participation, inclusion and choice for people
but has not explored specifically the effect on people with learning disabilities. Brighton: Pavilion.
with autism. In order to support implementation of Marvin C (1998) Teaching and learning for children with profound
and multiple learning difficulties. In: P Lacey & C Ouvry (Eds)
the SPELL framework in mainstream settings as well People with Profound and Multiple Learning Disabilities: A
as autism-specific settings, research in both special collaborative approach to meeting complex needs. London:
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26 Tizard Learning Disability Review Volume 14 Issue 3 July 2009 © Pavilion Journals (Brighton) Ltd
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