Professional Documents
Culture Documents
Cathy Little is a lecturer in the Faculty of Education and Social Work, University
of Sydney, Australia.
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SUPPORTING SOCIAL
INCLUSION FOR
STUDENTS WITH
AUTISM SPECTRUM
DISORDERS
Insights from Research and Practice
Introduction 1
Cathy Little
PART I
An introduction to social inclusion for students with
Autism Spectrum Disorder7
PART II
Social inclusion across the educational environment55
PART III
Key stakeholders in the support of social inclusion115
Index180
LIST OF FIGURES
Hannah Gill, LPC-I, earned her Bachelor of Science in Psychology and a Bachelor
of Music in Music Performance from the University of Florida and earned a
Masters in Counseling from Southern Methodist University. Hannah specializes in
working with children and their families, utilizing play therapy. Hannah is currently
working toward gaining licensure as a Licensed Professional Counselor and hopes
to gain licensure as a Registered Play Therapist in the near future. Hannah’s most
recent research endeavor involves examining the impact of participation in coun-
seling groups on the emotional and social cognition of individuals with Asperger’s
diagnosis on the Autism Disorder spectrum.
Alice Jones Bartoli is a senior lecturer in Psychology and the Director of the Unit
of School and Family Studies at Goldsmiths, University of London. Alice previously
worked in the Social Communication Disorders Clinic at Great Ormond Street
Hospital, and has also worked on projects examining outcomes related to social
inclusion in pupils with Autism Spectrum Conditions attending mainstream and
special schools.
List of contributors xiii
Jaclyn Joseph, PhD, BCBA, is the research and development coordinator at the
Positive Early Learning Experiences (PELE) Center of the University of Colorado,
Denver. Jackie’s professional and research interests include evidence-based inter-
ventions for reducing the challenging behaviors and improving the social emo-
tional competence of young children in home settings and in early education and
care classrooms.
Sunny Kim received her PhD in Education with an emphasis in Autism Spectrum
Disorders (ASD) from the University of California, Santa Barbara (UCSB) in 2014.
She is also a board-certified behavior analyst (BCBA).Throughout graduate school,
Dr. Kim worked closely under Drs. Robert and Lynn Kern Koegel, where she
received extensive training in Pivotal Response Treatment (PRT). She currently
works at the Koegel Autism Center as a program supervisor and is also the head
of the School Professional Socialization Training Project at UCSB. Dr. Kim has
received several extramural grants and published several peer-reviewed journal arti-
cles on improving social skills in individuals with ASD. Her research primarily
focuses on social skills training for students with ASD, school staff training, improv-
ing social pragmatic skills for individuals with ASD, and developing effective social
intervention models that can be implemented in the school setting.
Brittany Koegel received her PhD in special education and developmental dis-
abilities risk studies. Her interests are socialization skills for young adults with
Asperger Syndrome, academic motivation for children with autism, and commu-
nication for individuals with Autism Spectrum Disorders. Brittany is a Trainer
and School Program Director wih Koegel Autism: PRT Training and Services.
She specializes in training teachers, parents, and professionals in Pivotal Response
Treatment.
Lynn Kern Koegel, PhD, is the Clinical Director of the Koegel Autism Center at
the University of California, Santa Barbara. She has been active in the develop-
ment of programs to improve communication in children with autism, including
the development of first words, development of grammatical structures, and prag-
matics. Dr. Koegel is co-author and co-editor of major textbooks on autism and
positive behavioral support and is co-author of the bestselling book Overcoming
Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life
(Penguin, 2004). Dr. Koegel is actively involved in providing support and inter-
vention services in school districts, both locally in California and throughout the
United States. Dr. Koegel, and her husband Robert, were awarded the first annual
recipient of the Sesame Street Children’s Television Workshop Award for brighten-
ing the lives of children.
Janice K. Lee, M.Ed, BCBA, is a member of the research faculty at the University
of Nevada, Reno. Her experience and interests include early childhood/special
xiv List of contributors
Jill Locke, PhD is an assistant professor at the Center for Mental Health Policy
and Services Research at the University of Pennsylvania Perelman School of
Medicine. Dr. Locke’s research interests are in developing and implement-
ing interventions designed to address social ability in children with Autism
Spectrum Disorder in school settings as well as exploring the ways in which
treatment gains in intervention programs are generalized and sustained over time.
Dr. Locke recently modified a proven-efficacious intervention designed to
address social ability in children with autism, so that it can be used by school per-
sonnel to facilitate engagement and play between children with autism and their
peers during recess periods. She piloted the newly manualized program with
one-on-one autism instructional aides and is currently examining its implemen-
tation and sustainment in public schools.
Travis Moore is a recent graduate from the Master of Science in Counseling pro-
gram at Southern Methodist University where he also completed his Bachelor of
Arts in Biology. His research focuses on marginalized groups and examines how
experiences of discrimination and stigma may shape the mental health of minority
group members (autism, LGBTQ, people of color). Travis also examines sexual
and gender identity development throughout the lifespan and how multiple per-
sonal identities interact with ego. His most recent area of research is in social and
self-efficacy factors in autistic adolescents and adults that may promote the mental
health of autistic individuals.You may reach Travis via email at trmoore@smu.edu.
List of contributors xv
Caitlin van der Walt is a Bachelor of Education (Primary) Honours graduate from
the University of Sydney. She completed her honours in the field of Asperger
Syndrome and Social Identity. Caitlin now works as a teacher of primary school–
aged students with ASD. The construction of identity for persons with ASD is an
area of research that continues to hold her interest and in which she is keen to
continue with further investigations.
Many people have generously shared their time, knowledge and expertise to help
write this book. I would like to thank:
• Any and all students who share in a diagnosis of Autism Spectrum Disorder.
Without question you make us better teachers and better people. It is a
privilege to be part of your network of support.
• All chapter authors who were willing to share their knowledge through their
contributions to this book. I thank you for your time, your generosity and your
commitment.
• Sarah Tuckwell and Alison Foyle from Routledge Publishers who have been
instrumental in seeing this book come to fruition.
• Finally I would like to thank David, Josh, Ben and Grace for their endless
patience and support in seeing this book come to life.
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INTRODUCTION
Cathy Little
Appropriate and accessible education for all is, in essence, a matter of social j ustice.
Internationally this issue has come into focus increasingly over the past century
with the development of a series of statements and declarations on human rights,
which include the right to education for all, the rights of people with disabili-
ties, and the right to equitable and accessible education for people with disabil-
ities (see Salamanca Statement and Framework for Action on Special Education Needs
[UNESCO, 1994]; UN Convention on the Rights of Persons with Disabilities and
Optional Protocol [UN General Assembly, 2007]; World Declaration on Education for
All (UNESCO, 1990]).
The concept of inclusion in education worldwide advocates that students with
special needs can and should be educated in the same settings as their typically
developing peers with appropriate support services, rather than being placed in
special education classrooms or schools (Polat, 2011). For the majority of students
with Autism Spectrum Disorder (ASD) or Autism Spectrum Conditions (ASC),
their placement is within regular classes with regular students but with teachers
who often have limited experience or knowledge about their specific disability.
Of primary concern for students with Autism Spectrum Disorder, however, is that
due to the very nature of their disability, placement in a regular class may result in
‘exclusion’ because the teacher, the classroom and the school are not meeting the
student’s individual social needs.
Research has discussed how the unique social impairments of students with
Autism Spectrum Disorder requires targeted intervention to support active social
engagement with others (e.g. Lindsay, Proulx, Scott and Thomson, 2014). However,
in discussing successful inclusive practice, the focus appears to be placed on stu-
dents’ achievement of academic outcomes as the measure of success. Given the
nature of Autism Spectrum Disorder as primarily a social disorder, success for
2 Cathy Little
(2014) confirmed that children and youth with Autism Spectrum Disorder were
experiencing increased rates of bullying relative to the general population and
higher rates of victimisation than peers with other forms of disability. Discussion
of the impacts of poor and/or negative socially inclusive opportunities within the
educational environment can be found in Chapter 3 where Sarah Feuerbacher,
Travis Moore and Hannah Gill investigate the broad spread, often long-term,
impacts of bullying and the social vulnerability of students with Autism Spectrum
Disorder.
Despite the nature of Autism Spectrum Disorder as a social disorder, limited
attention has been given to the importance of social identity in individuals with
Autism Spectrum Disorder. In Chapter 4 Caitlin van der Walt describes how
identity is a complex and ongoing process that provides an insight into a person,
determining how others view them and how they come to understand and view
themselves.This notion of identity emphasises the complexity of the ongoing social
processes involved in the formation of identities, as they are continually constructed,
challenged, adjusted and changed through the process of social inclusion.
Socialisation is a skill that is as important as communicating, reading and writ-
ing and needs to be included in students’ learning programs. But how socialisation
is taught varies significantly given the age and educational setting of the child or
student. Part 2 presents a series of chapters that investigate the social inclusion
construct across different educational timeframes, with each chapter highlighting
the challenges to social inclusion that children and students with Autism Spectrum
Disorder face as a result of their social communication and behavioural difficulties.
In Chapter 5, Janice Lee, Phil Strain, Jaclyn Joseph and Glen Dunlap discuss social
inclusion for young children with Autism Spectrum Disorder across the preschool
years. From issues surrounding diagnosis and family-centred planning to choice
regarding preschool education, the chapter discusses the benefits of early inter-
vention for long-term success in developing children’s critical social behaviours.
Because children with Autism generally do not initiate interactions, social skills
training, including how to respond in social situations, should begin as early as
possible and continue throughout the child’s education. It is in these early years
that the foundations of these essential social behaviours begin to develop through
explicit and directed instruction.
For some children it may not be until they enter formal schooling that their
Autism features become clearly seen. When viewed alongside their peers, differ-
ences in communication, socialisation and behaviour can often become more
noticeable in a child with Autism Spectrum Disorder. In Chapter 6, Alice Jones
Bartoli examines social inclusion for students with Autism Spectrum Disorder
across the primary school years, where educators expect school age children to talk
and play with others, not to be alone on the playground or have problems fitting in
with the expectations of the teachers and students. Jones details how individualised
planning and evidence-based strategies are used to address the unique social needs
of primary school–aged students with Autism Spectrum Disorder.
4 Cathy Little
References
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders.
Fifth edition. (DSM-V). Washington, DC: Author.
Bosaert, G., Coplin, H., Jan Pijl, S., and Petry, K. (2013). Truly included? A literature study
focusing on the social dimension of inclusion in education. International Journal of Inclusive
Education, 17(1), 60–79.
Koster, M., Nakken, H., Jan Pijl, S., and van Houten, E. (2009). Being part of the peer group:
A literature study focusing on the social dimension of inclusion in education. International
Journal of Inclusive Education, 13(2), 117–40.
Lindsay, S., Proulx, M., Scott, H., and Thomson, N. (2014). Exploring teachers’ strategies for
including children with autism spectrum disorder in mainstream classrooms. International
Journal of Inclusive Education, 18(2), 101–22.
Polat, F. (2011). Inclusion in education: A step towards social justice. International Journal of
Educational Development, 31(1), 50–8.
Schroeder, J. H., Cappadocia, M. C., Bebko, J. M., Pepler, D. J., and Weiss, J.A. (2014). Shedding
light on a pervasive problem: A review of research on bullying experiences among chil-
dren with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7),
1520–34.
UN General Assembly. (2007). Convention on the Rights of Persons with Disabilities and Optional
Protocol. New York: United Nations.
UNESCO. (1990). World Declaration on Education for All. New York: Author.
UNESCO. (1994). The Salamanca Statement and Framework for Action on Special Needs Education.
Paris: Author.
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PART I
An introduction to social
inclusion for students with
Autism Spectrum Disorder
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1
SOCIAL INCLUSION AND AUTISM
SPECTRUM DISORDER
Cathy Little
The term social inclusion can take on a distinct meaning dependent on the context
in which it is being used. When asked to define social inclusion, one’s answer is
very much determined by the situation to which they are applying the term. The
concept term ‘social inclusion’ appears primarily when discussing the representa-
tion of marginalized groups and individuals who have been pushed toward or kept
to the sidelines of society as a result of their exclusion from the typical activities
of the wider community (Bottrell and Goodwin, 2011). Marginalization impacts
society’s most vulnerable: the elderly, the infirm, people from low socio-economic
locales, the cultural minority, individuals with mental health concerns and persons
with a disability. Within the context of marginalization, social inclusion is often-
times defined by the concept of social exclusion, that is, exclusion from all aspects
of the broader community as a result of poverty or disadvantage. Social inclusion,
by definition, is the opposite of social exclusion. Thus, attempts at reframing social
inclusion for marginalized persons simply requires focus on remediation of those
areas where persons are excluded.
The context of social inclusion pertinent to this chapter, and to the majority of this
book however, is the context of education: the community of school and education
service provision, from early childhood centres to tertiary institutions and post-school
employments placements. The participants who form part of this educational com-
munity include, but are not limited to, students, teachers, school administrators, sector
level decision makers and families. Social inclusion in the educational context refers
to the inclusion of and active participation by all students in the school’s social agenda.
It relies on teacher’s active preparation for, and facilitation of, socially inclusive oppor-
tunities for students who, for a range of reasons, may be unable to perform the social
behaviours expected of the setting and which will support their functional inclusion
in social activities of education. One such group of students who require targeted
support for their social inclusion are students with an Autism Spectrum Disorder.
10 Cathy Little
This chapter will introduce the reader to the characteristics of a student with an
Autism Spectrum Disorder, highlighting the pervasive social difficulties inherent to
the disorder which can often inhibit social interactions and generate opportunity
for misunderstanding and social segregation. When discussing social inclusion for
students with an Autism Spectrum Disorder, one must consider the philosophy of
inclusion and how this practice affords students with an Autism Spectrum Disorder
equal opportunity for social engagement and participation. Discussion then centres
on the emergence of social inclusion as a distinct theoretical construct rather than
simply an element of the broader philosophy of inclusion. Framed within the liter-
ature, a current, contemporary definition of social inclusion is provided to conclude
the chapter.
affection from their children and failing to make a good connection with them
(Bettelheim, 1967). In 1998, British former surgeon and medical researcher Andrew
Wakefield published, in the prestigious medical journal The Lancet, a paper in sup-
port of the claim that there existed a link between administration of the measles,
mumps and rubella (MMR) vaccine and the onset of Autism. Following his claim,
numerous large-scale studies were undertaken in an attempt to validate his find-
ings. None were able to reproduce his findings or confirm his hypothesis. Claims
were made that Wakefield had manipulated evidence and his paper was retracted
in 2010. A number of studies have ruled out any link between vaccines and Autism
(e.g., DeStefano, Price and Weintraub, 2013; Price et al., 2010) but doubt remains,
with skeptic groups maintaining there is a link between Autism and vaccination.
Research continues to search for a cause.
Thirdly, Autism is a lifelong, pervasive developmental disorder with no cure.
Since Kanner’s original description, society has learnt a great deal about Autism.
Dodd (2005) acknowledges, “In the past twenty years in particular, there have been
remarkable developments in our knowledge of what Autism is, why it happens, and
how it should be treated” (p. vii). Education for all is therefore central to under-
standing Autism and for supporting the individual diagnosed with this disorder.
The prevalence of persons diagnosed with an Autism Spectrum Disorder con-
tinues to rise. In the United States, figures from the Centers for Disease Control
and Prevention (CDC) reported that in 2009, “an average of 10 in 1000 children
aged 3 to 17 years were diagnosed with Autism, and in 2012, 1 in 88 children were
estimated to be diagnosed with ASDs” (Graff, Berkeley, Evmenova, and Park, 2014,
p. 158). In Australia, the 2012 Survey of Disability, Ageing and Carers (SDAC)
“showed an estimated 115,400 Australians (0.5 per cent) had Autism. This was a 79
per cent increase on the 64,400 people estimated to have the condition in 2009”
(ABS, 2014, p. 2). Consistent with overseas estimates, the prevalence rate was four
times higher for males than for females, with prevalence peaking in the five to nine
year age group.
Inclusion in education
In the past, students with Autism Spectrum Disorder tended to be segregated from
their peers. The trend in education now appears to be an increasing movement
towards educating all students with disabilities in regular education settings and/or
classrooms. The term ‘regular education’ can be interchanged with ‘mainstream’ in
the discussion of class placement options for students.
The literature surrounding inclusion describes the challenges faced by schools,
teachers and students when implementing inclusive practice (Greenstein, 2014;
Malinen, Savolainene and Xu, 2012). Teachers continue to have limited belief in
their preparedness to support students with special education needs both gener-
ally (Swain, Nordness and Leader-Janssen, 2012), and for students with an Autism
Spectrum Disorder (Humphrey and Symes, 2013; Lindsay, Proulx, Thomson and
Scott, 2013).
12 Cathy Little
Social inclusion
Yet, the term social inclusion is a nebulous one. Many studies use similar terms
to describe the same idea. ‘Social integration’, ‘social participation’ and ‘social
inclusion’ are often used interchangeably to describe the same concept. In 2009,
Koster, Nakken, Jan Pijl and van Houten undertook a review of the literature
published between 2000 and 2005 that focused on the social dimension of inclu-
sion in education. Implementation of selection criteria (i.e. empirical research or
literature review, published in international journals, aimed at pupils with special
needs in elementary or preschool and focused on the social dimension of inclusion)
returned 62 studies for examination. Following analysis, the authors found three
distinct terminologies, or umbrella terms used to describe the social dimension of
inclusion: social integration, social inclusion and social participation. Their review
addressed these three concepts in turn, detailing the explicit and implicit definitions
that emerged from the literature.
Of the 62 articles included in their examination, only six studies used the term
social inclusion. Yet, no explicit definition of the term was stated in any study;
only implicit definitions were alluded to. In the absence of an explicit definition
of social inclusion, Koster et al. (2009) described several common aspects reported
across these six studies: friendship, acceptance, interaction, relationships, social status
and bullying. The authors determined “the concept of social integration and its
related concepts, social inclusion and social participation, hardly seem to differ in
practice with respect to content, if at all” (p. 131). They claimed these three terms
were used interchangeably within the literature and were ascribed similar mean-
ings. Thus, they concluded that social participation should be used to refer to the
social dimension of inclusion. Social inclusion was rejected as a concept term as
“inclusion is an extensive concept which logically embraces the social dimension”
(p. 134).
Bossaert, Coplin, Jan Pijl and Petry (2013) closely replicated the Koster et al.
(2009) study, using literature from 2000–2008, with the intent of clarifying the
three concept terms describing the social dimension of inclusion in the secondary
education setting. Bossaert et al. sought to ascertain any parallels or differences
between their study and the previous review. Using the same sources and selection
criteria, Bossaert et al. selected 19 articles for use in their examination.
Once again results found social integration was the term most frequently used
in the research literature. Unlike Koster et al. (2009), Bossaert and colleagues (2013)
reported five of the seven articles that used the term social inclusion provided an
explicit definition of the term. Using narrative description Bossaert et al. identified
key themes central to each study’s definition. These themes closely mirrored those
of the previous study and included: peer acceptance, bullying, friendships and social
isolation. The authors concluded their findings closely paralleled those obtained
by Koster et al., thus confirming that terms such as social integration, social inclu-
sion and social participation are used interchangeably in the research literature and
assigned similar meanings.
14 Cathy Little
Student as influencer
Students with an Autism Spectrum Disorder display characteristics that can assist
them in their social inclusion. It has been found that students with Autism Spectrum
Disorder are often passionate about specific areas of interest and pursue those areas
with great enthusiasm (Attwood, 2003). This could provide students with Autism
Spectrum Disorder a way to interact with others in their class. It would be remiss
at this point not to acknowledge the strengths of students with Autism Spectrum
Disorder and to detail the benefits their presence can bring to a regular education
classroom. Students with Autism Spectrum Disorder possess unique ways of think-
ing and of seeing the world. For example, a student with Autism Spectrum Disorder
may be extremely knowledgeable about one or a number of particular topics of
Social inclusion and ASD 15
interest, and know these topics intimately. If teachers recognise this expertise,
students can take on leadership roles in supporting peers to develop projects or
pieces of work based around this topic (Morewood, Humphrey and Symes, 2011).
Personality traits of young people with Autism Spectrum Disorder such as deter-
mination, dedication, and resiliency can produce a commitment to learning and to
overcoming academic challenges, with a view to long-term success in the educa-
tional arena (Carter et al. 2015). The ability to systematise, to deal with concepts
that have particular rules, allows some persons with Autism Spectrum Disorder
to excel in areas such as mathematics, technology and physics. Thus, persons with
Autism Spectrum Disorder have a number of strengths that facilitate a positive
contribution to the mainstream classroom.
Social skills
An essential component in the development of a positive school climate, and the
success of the student with Autism generally, is the development of social skills
(Stitchter et al., 2012). In order to participate as part of the school community,
students with Autism need to develop appropriate social behaviours. Research has
found that simply including or placing students with Autism in the general class-
room does not automatically lead to better socialisation outcomes for them (Hart
and Whalon, 2011). If we expect students with Autism to demonstrate appropriate
social behaviours in specific social situations, then explicit teaching of such skills is
required.
A consistent difficulty for persons with an Autism Spectrum Disorder is the
limited presence of social skills. Research has noted that difficulty in social inter-
action and understanding is a primary defining characteristic of Autism (Locke,
Rotheram-Fuller and Kasari, 2012). Hart and Whalon (2011) discuss how many
children misread social situations, leading them to act inappropriately. Aside from
inappropriate verbal comments, other socially inappropriate responses can include
the use of voice as inappropriately silly; too loud or aggressive tone; inappropriate
physical touching; rude, immature behaviour; and overreaction to both people and
stimuli.
In order to participate as part of the school community, students with Autism
need to develop appropriate social behaviours. Research has found that simply
including or placing students with Autism in the general classroom does not auto-
matically lead to better socialisation outcomes for them (Hart and Whalon, 2011).
If we expect students with Autism to demonstrate appropriate social behaviours in
specific social situations, then explicit teaching of such skills is required to facilitate
an acceptable level of social competence.
Difficulties that arise from impairments in social communication can affect the
student’s ability to interact in the classroom and impact negatively on their ability
to establish and maintain friendships over time (Locke et al., 2013). These include
difficulties in predicting others’ behaviour leading to avoidance of other students;
difficulties in understanding behaviour of self and others, and how this affects the
16 Cathy Little
way people think; an inability to deceive thus becoming the class ‘dobber’; and
difficulty in differentiating fact from fiction resulting in the inability to perceive
from another’s perspective (Rowley et al., 2012). Poor or inappropriate displays of
social competence can have damaging results. A serious problem for teachers is the
propensity of children with disabilities to be bullied.
A key element expressed in Kanner’s initial research was the indifference that
children with an Autism Spectrum Disorder appeared to have towards contact with
others and an apparent disinterest in social engagement with others in their environ-
ment. This has led the assumption that persons with an Autism Spectrum Disorder
do not want friends. Daniel and Billingsley’s (2010) study of friendship, however,
found all the students with an Autism Spectrum Disorder diagnosis in their research
were able to identify at least one friend. Using student self-reports combined with
interviews from parents and teachers and document reviews, they concluded that
having friends, recognising challenges in establishing friends, sharing interests, and
friendship stability over time were factors central to the establishment and mainte-
nance of friendships for students with an Autism Spectrum Disorder.
Thus, both in the classroom and on the playground, students with an Autism
Spectrum Disorder will require ongoing support and instruction to help them
recognise the effects of their actions on others, and how to become aware of their
own thoughts, feelings and attitudes. This awareness of self has been recognised
as vital, as is the recognition of feelings and emotions. Students with an Autism
Spectrum Disorder do not learn to socialise through observing and imitating
others due to a lack of awareness of the needs of others in relation to themselves
(Baron-Cohen, Tager-Flusberg and Cohen, 2000). Explicit instruction in appro-
priate social behaviours can be taught through targeted social skills instruction.
Direct instruction is required to increase the student’s awareness of the ways in
which people behave and how to interact with others.The learning of social skills
requires a prolonged and systematic effort for students, but it has lifelong impli-
cations. Research has shown that social skills are related to long-term adjustment
and prognosis for both individuals with and without Autism (Banda and Hart,
2010).
Relationships and social networks among students are a key issue in inclu-
sive education (Jan Pijl, 2007) and for the inclusion of students with an Autism
Spectrum Disorder (Locke et al., 2013). In a study investigating students’ knowledge
of Autism and attitudes toward integrated peers with an Autism Spectrum Disorder,
Mavropoulou and Sideridis (2014) found that when compared to a comparison
group, typically developing peers indicated greater knowledge of Autism and more
positive attitudes and behavioural intentions toward their classmates with an Autism
Spectrum Disorder as a result of contact through students’ inclusion in the general
education classroom. Peers in the class of a child with an Autism Spectrum Disorder
will need explanations and guidance in understanding and encouraging the friend-
ship abilities of their classmate. Students with an Autism Spectrum Disorder are
more likely to improve their social skills if their typically developing peers are
taught how to interact with them. The support of peers through peer-mediated
Social inclusion and ASD 17
interventions has been found to be one of the most effective social interaction
interventions (Hart and Whalon, 2011; Locke et al., 2012).
This chapter proposes a revised definition of social inclusion, one that has pro-
gressed from an abstract, subjective description of a student’s ability to be socially
included, to an explanation that involves a more contemporary, active demonstration
of a student’s inclusion in social relationships.This revised definition is informed by
the voice of the student and the dynamic interplay with key figures in their imme-
diate educational environment.
Moving beyond a superficial definition of social inclusion as merely equity of
representation, this paper utilises a definition that recognises equity of recognition. This
views social inclusion as a dynamic process of recognition of individuals and groups
for who and what they are (Raffo and Gunter, 2008). For the purposes of this
chapter, the term ‘social inclusion’ is used as a framework for understanding the
meaningful participatory access of students with an Autism Spectrum Disorder into
regular education settings. It involves active levels of social involvement with teach-
ers and peers. It exceeds mere integration by encompassing a “psychological sense
of connection to others along with physical access and social interaction” (Misener
and Darcy, 2013, p. 4) with intangible factors, such as being “treated with dignity
and respect, being able to form and maintain friendships and intimate relation-
ships, and generally being able to live as equals in the broader community” (Schur,
Kruse and Blanck, 2014, p. 119).
Social inclusion for students with an Autism Spectrum Disorder can be defined
as the demonstration of at least one enduring, reciprocal friendship, and self-initiated, active
participation in group activities with acceptance shown by group members. This definition
affords a meaningful contribution to future research studies in this area owing to its
focus on students’ active demonstration of their participation in social relationships
rather than simply having the ability to do so (Bossaert et al., 2013).
References
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18 Cathy Little
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20 Cathy Little
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2
SOCIAL INCLUSION FOR STUDENTS
WITH AUTISM SPECTRUM DISORDER
Sunny Kim, Brittany Koegel and Lynn Kern Koegel
With current estimates that 1 in 68 children are diagnosed with Autism Spectrum
Disorder (ASDs) (Centers for Disease Control and Prevention, 2015), the num-
ber of students with ASD entering public schools has greatly increased since the
1990s (National Center for Education Statistics [NCES], 2014; Mazurik-Charles
and Stefanou, 2010; Scull and Winkler, 2011). Specifically, since 1992 the number of
students with ASD has increased by over 800 per cent (Individuals with Disabilities
Education Act, 2004; Aud et al., 2012).The Individuals with Disabilities Act (IDEA)
suggests that students with ASD be educated in the least restrictive environment
(LRE) alongside their typically developing peers.That is, recommendations are that
students with ASD be taught in the general education classroom with appropriate
support, instead of being educated in segregated special day class.
A key benefit of providing inclusive education to students with ASD is that
they have the greatest potential to learn and develop appropriate social skills from
their typically developing peers. In addition, when appropriate social interventions
are implemented in the inclusive school environment students with ASD have an
opportunity to develop meaningful and reciprocated friendships with their typi-
cally developing peers. This chapter will explore: (1) the social impairments in stu-
dents with ASD; (2) the importance of social interventions for students with ASD
in inclusive settings; and (3) a few evidence-based interventions to address the social
challenges for these students.
interacting with their peers and exhibit low responsiveness, limited or nonexistent
initiations, reduced conversational reciprocity, and an overall difficulty sustaining
social engagement (DiSalvo and Oswald, 2002; Knott, Dunlop and Mackay, 2006).
Moreover, students with ASD rarely engage in reciprocal social interactions with
typically developing peers (Koegel, Koegel, Frea, and Fredeen, 2001) and are at
great risk for social isolation, poor friendships, and loneliness (Bauminger and
Kasari, 2000).
This lack of socialisation can also lead to long-term consequences for students
with ASD. For example, these social impairments may increase the risk of stu-
dents with ASD to develop secondary co-morbid disorders such as social anxi-
ety (Gillott, Furniss and Walter, 2001; Wood and Gadow, 2010) and/or depression
(Kim, Szatmari, Bryson, Streiner, and Wilson, 2000; Stewart, Barnard, Pearson,
Hasan, and O’Brien, 2006; Strang, Kenworthy, Daniolos, Case, Martin and Wallace,
2012). Simonoff, Pickles, Charman, Chandler, Loucas and Baird (2008) found that
individuals with ASD are up to 29.2 per cent more likely to develop a co-morbid
diagnosis of social anxiety compared to the general population. Strang, Kenworthy,
Daniolos, Case, Martin and Wallace (2012) found that 30 per cent of their sample
was in the clinical range for depression, which is a much higher rate than the gen-
eral population.
Students with ASD also report to be lonelier than their typically developing
peers (Lasgaard, Nielsen, Eriksen, and Goossens, 2010; Locke, Ishijima, Kasari, and
London, 2010). While these students yearn for friends (Beresford, Tozer, Rabiee,
and Sloper, 2007), their lack of social skills hinders their ability to form meaningful
friendships with typically developing peers. Instead, these students are often bullied
and teased in schools because of their differences (Humphrey and Symes, 2011;
Roekel, Scholte and Didden, 2010; Symes and Humphrey, 2010).
result in more rapid treatment gains for students with ASD (Koegel and Koegel,
2006; Koegel and Koegel, 2012; National Autism Center, 2009; Reichow and
Volkmar, 2010).
Moreover, variables such as incorporating highly preferred activities into special-
ised activities (Baker, Koegel and Koegel, 1998; Koegel et al., 2012; Koegel et al.,
2012; Koegel et al., 2013), priming or prior experience with activities (Gengoux,
2009; Koegel, Koegel, Frea and Green-Hopkins, 2003; Zanolli, Daggett and Adams,
1996), setting up and maintaining cooperative arrangements (Dugan, Kamps,
Leonard,Watkins, Rheinberger and Stackhaus, 1995; Jull and Mirenda, 2011; Koegel,
Werner,Vismara and Koegel, 2005), providing peer-mediated interventions (Chan
et al., 2009; DiSalvo and Oswald, 2002; Mason, Kamps, Turcotte, Cox, Feldmiller
and Miller, 2014; Pierce and Schreibman, 1997), and using trained paraeducators to
facilitate social interactions (Feldman and Matos, 2013; Koegel, Kim and Koegel,
2014; Kim, 2014; Robinson, 2011) have been shown to be important variables in
providing an inclusive social environment that encourages students with ASD to
interact with their typically developing peers. These components, used in combi-
nation, have been shown to produce particularly large effects for improving social-
isation particularly in encouraging social participation, engagement, generalisation
to other settings, and development of reciprocated friendships (Koegel and Koegel,
2006; Koegel and Koegel, 2012). Each of these variables will be discussed in the
following section.
Evidence-based interventions
It is mandated, and best practice, that schools implement evidence-based programs.
That is, schools must implement programs that are supported by research. This sec-
tion will describe a few evidence-based programs that address social inclusion for
students with ASD in the school setting.
Specialized school activities. One line of research addressing social interventions
for students with ASD has shown that implementing specialized social interven-
tions in the form of “clubs” that incorporate the preferred interests of students with
ASD has been successful for improving social skills in these students (Baker et al.,
1998; Koegel, Fredeen et al., 2012; Koegel,Vernon et al. 2012; Koegel, Kim, Koegel
and Schwartzman, 2013). This type of intervention has proven to be effective for
improving social skills in students with ASD, and is applicable to all different grade
levels and to all students with varying functioning levels (Koegel, Freedan et al.,
2012; Koegel et al., 2013).
For example, Baker, Koegel, and Koegel (1998) conducted a study that created
lunch clubs using perseverative interests of students with ASD as the theme of a group
activity. Using a multiple baseline across participants design, the authors incorporated
perseverative interests of elementary school students with ASD into common play-
ground activities. For example, one of the participants had a perseverative interest
in state capitals, thus a state capital tag game was developed. As various state capitals
were called, students had to run to that state on a large playground map.The authors
24 Sunny Kim, Brittany Koegel and Lynn Kern Koegel
found that implementing the activities that incorporated the perseverative interests
of the students with ASD led to increases in appropriate social interactions between
students with ASD and typical peers.The study also found that this type of interven-
tion resulted in generalization to other playground activities and an improved overall
affect for both students with ASD and typical peers.
Similarly, Koegel, Fredeen, Kim, Danial, Rubinstein, and Koegel (2012) and
Koegel, Kim, Koegel, and Schwartzman (2013) expanded this line of research by
incorporating child-preferred interests into club activities for adolescents with ASD.
For example, one of the participants had a preferred interest in movies. Therefore,
a movie trivia club that was available to all students at the high school was created.
The nice thing about this type of social intervention was that it was similar to
other clubs already available at the high school, thus the typically developing stu-
dents were unaware that it was created around a specialized theme. The researchers
found that incorporating the preferred interests of students with ASD into clubs
led to improvements in social engagement and verbal initiations for these students.
The researchers also found that both students with ASD and typically developing
peers self-reported happiness and enjoyment when participating in the social inter-
vention. Finally, the researchers found that a few of the participants were able to
develop reciprocated friendships with typically developing peers.
Anecdotally one of the participants had never been invited to hang out with
a typically developing peer, nor had he received a birthday invitation from a peer,
until he participated in the club designed around his perseverative interest (i.e.,
Movie Trivia Club). However, during the course of this study, he received multiple
invitations to hang out and invitations to birthday parties from typically develop-
ing peers who also participated in the same club. These studies demonstrate that
incorporating the preferred interests of students with ASD into clubs is a simple yet
effective social intervention model that is enjoyable for all students. Also, because
the students with ASD generally have accumulated a vast knowledge base in the
club theme, they are often viewed as the valued member of the peer group.
Priming. Often times, there is a complete lack of socialization or initiations
made by students with ASD, even when there is a presence of potential social
partners in close proximity. While there are many ways to increase socialization for
individuals on the spectrum, social priming is an effective evidence-based strat-
egy to increase social competence (Gengoux, 2009). Social priming is a strategy
that involves previewing an activity in a low-demand, highly reinforcing context
(Wilde, Koegel, and Koegel, 1992; Zanolli et al., 1996). For social priming, one
should preview a social game (e.g., Connect 4, card games, silly faces for elementary
school students) then provide the student access to the same game during a social
context, such as recess.
Priming should be done relatively close in time to the exposure of the activity,
such as either right before the exposure, after school the previous day, or the night
before at home. Research has shown that when children with ASD are primed,
it results in increased rates of initiations and higher levels of peer social interac-
tion. Further, children who are primed are able to excel as the more competent
Social inclusion for students with ASD 25
peer during the social interaction. That is, they are often able to explain the game
directions to their peers, and demonstrate competence in the activity that was
primed.
While priming does not focus on teaching specific behaviors (initiations, com-
pliments, responsiveness), it focuses on teaching the reinforcing aspect of the social
game, and results in child competence with the activity. The reason social priming
is an ideal procedure and different from other approaches is that it functions as an
antecedent intervention and does not require the vigilance and intervention from
a treatment provider in the child’s natural setting with peers. This may be helpful
in reducing any stigmatization that may occur when instruction and feedback is
provided when peers are present.
In regard to overall social needs, priming is just one technique that should be
used in combination with other interventions for a comprehensive program tar-
geting a child with Autism’s social challenges. To date, most priming studies have
focused on verbal children with Autism. However, for this population it is a simple
technique that can be implemented immediately, with very rapid improvements,
often the first day after priming is implemented.
Cooperative arrangements. Another effective strategy to successfully promote
social interactions between students with ASD and typically developing peers is to
provide cooperative arrangements. Kim and Koegel (2012) suggest that providing
a context that promotes cooperative arrangements is crucial to the success of these
social games and activities. Cooperative arrangements are scenarios in which mate-
rials are arranged so that students with ASD and their typically developing peers
have to rely on each other in order to complete the task/activity (Jull and Mirenda,
2011; Koegel, Werner, Vismara and Koegel, 2005). By setting up and maintaining
cooperative arrangements, students with ASD are provided with a natural context
in which they may appropriately interact with their typically developing peers
(Koegel and Koegel, 2006).
Research has also shown that setting up cooperative arrangements can lead to
more frequent social interactions between students with ASD and typically devel-
oping peers. For example, Dugan, Kamps, Leonard, Watkins, Rheinberger, and
Stackhaus (1995) set up cooperative arrangements in an inclusive classroom set-
ting where individuals contributed their specific strengths during group interac-
tions. As a result of setting up cooperative arrangements, academic achievement
as well as social interactions between students with ASD and typically developing
peers improved. In addition, teachers and paraeducators, responsible for setting up
and maintaining cooperative arrangements, reported that it was simple and easy to
implement.
Research has also shown the positive benefits of cooperative arrangements
during play activities (e.g., non-academic periods). For example, Koegel, Werner,
Vismara, and Koegel (2005) assessed whether setting up cooperative arrangements
with mutually reinforcing activities during play dates would improve social inter-
actions between children with ASD and typically developing peers. The research-
ers found that when cooperative arrangements were in place, reciprocal social
26 Sunny Kim, Brittany Koegel and Lynn Kern Koegel
interactions improved between children with ASD and typically developing peers.
On the other hand, when cooperative arrangements were not in place, children
with ASD exhibited lower levels of reciprocal social interaction with typically
developing peers. The results of this study highlight the importance of arranging
the environment in such a way as to promote reciprocal social interactions between
students with ASD and typically developing peers.
Peer-mediated interventions. As typically developing peers may have a contin-
uous dynamic interaction with adolescents with ASD, they have the potential to
foster an inclusive social environment where they can teach appropriate social skills
to students with ASD. Typically developing peers can also serve as role models for
how adolescents with ASD should socialize with peers.
The use of typically developing peers as intervention agents has been found to
be more effective in regard to improving the social skills in students with ASD than
the use of adults implementing the intervention (Bene, Banda and Brown, 2014;
Kasari et al., 2012). For example, Pierce and Schreibman (1997) taught typically
developing peers to implement components of Pivotal Response Treatment (PRT)
in order to socially engage students with ASD. Specifically, the authors trained the
peers using a multi-component training model (i.e., combination of modeling,
role-playing, and didactic instruction). The results of the study showed that when
typically developing peers were implemented PRT, the rates of verbal initiations
made by student with ASD increased and their newly acquired social skills gener-
alized to other untrained peers.
Similarly, Mason, Kamps, Turcotte, Cox, Feldmiller, and Miller (2014) trained
typically developing peers to provide appropriate prompts to students with ASD
in order to elicit appropriate social behaviors. The results of the study suggest that
when typically developing peers were trained to appropriately prompt students
with ASD, the social behavior (i.e., verbal communication directed to a peer) of stu-
dents with ASD all drastically improved. Studies such as these suggest that typically
developing peers can be ideal interventionists in the school setting.
A concern some have raised regarding the utilization of typically developing
peers as intervention agents is any potential negative effects it may have on these
students. Research, however, suggests that using typically developing peers does
not negatively impact their social status in the school setting (Locke, Rotheram-
Fuller and Kasari, 2012). In contrast, research suggests that typically developing
peers who serve as peer models to students with ASD become socially connected
to these students while maintaining a strong and positive role in their schools
(Locke et al., 2012).
Paraeducator support. In order for students with ASD to be successfully included
in their general education class, schools often provide a one-on-one paraeducator
for support. In fact, it has become standard practice for schools to rely on paraedu-
cators to help students with ASD receive an inclusive education alongside typically
developing peers (Giangreco, Broer and Edelman, 2010; Jones and Bender, 1993;
Riggs and Mueller, 2001;Young, Simpson, Myls and Kamps, 1997). Along with aca-
demic responsibilities, an essential role for paraeducators is to provide social support
Social inclusion for students with ASD 27
for students with ASD (Etscheidt, 2005), however most are not adequately trained
and often provide too much or too little social support.
The literature suggests that paraeducators can be trained to fidelity to imple-
ment effective social interventions during non-academic periods (Feldman and
Matos, 2013; Koegel, Kim, and Koegel, 2014; Licciardello, Harchik, and Luiselli,
2008; Robinson, 2011). For example, Robinson (2011) trained four paraeducators
via video-feedback modeling to implement Pivotal Response Treatment (PRT)
during lunch recess. Specifically, a trainer modeled the correct implementation of
PRT in the natural setting for three consecutive days. The trainer then videotaped
the paraeducators implementing PRT. After the session, the trainer and each par-
aeducator watched the video clip together while the trainer provided feedback
to the paraprofessional. As a result of the training, the paraeducators’ involvement
and implementation of PRT increased while hovering decreased. In addition, the
students made positive gains in their individualized target goals related to social
communication and demonstrated either maintained or improved affect. The study
also found large and rapid improvements in the paraeducators’ performance, and
the author noted that this may be partially attributed to the training taking place
in the natural setting.
Feldman and Matos (2013) also trained three paraeducators to facilitate social
interactions between students with ASD and typically developing peers using PRT
during non-academic periods. The multi-component training consisted of a work-
shop, a field manual, and three days of on-site training. If a paraeducator did not
meet fidelity of implementation they were trained for an additional three days or
until they met fidelity. After training, paraeducators were able to appropriately and
successfully facilitate social interactions between students with ASD and typically
developing peers.
Finally, Koegel, Kim, and Koegel (2014) trained three paraeducators to fidel-
ity to implement specialized lunch club activities during non-academic periods
(i.e., lunch-recess). Specifically, paraeducators were trained to stand in an appro-
priate proximity, provide cooperative arrangements, and incorporate the preferred
interests of the student with ASD. The authors found that after the paraeducators
received training, they were able to provide an inclusive social environment to
students with ASD during lunch-recess. The authors also found that as a result
of training paraeducators, the social engagement for students with ASD greatly
improved. These studies demonstrate that with appropriate training paraeducators
may be ideal school personnel for developing and providing an inclusive social
experience for students with ASD.
Future directions
While the current literature on social inclusion for students with ASD offers some
optimism for practitioners and researchers that social skills of students with ASD can
improve, additional research in this area is warranted. The majority of the research
on social inclusion has been conducted with younger children. To date, there is
28 Sunny Kim, Brittany Koegel and Lynn Kern Koegel
Summary
A main challenge for students diagnosed with ASD is social deficits. However, with
effective social interventions, students with ASD can, and do, develop appropriate
social skills. This chapter discussed several evidence-based social intervention pro-
grams that can be implemented in the school environment to address the social
challenges of students with ASD. In order to make the social experience positive
for these students, it is imperative that school personnel are adequately trained to
implement such interventions.
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3
BULLYING AND SOCIAL
VULNERABILITY OF STUDENTS WITH
AUTISM SPECTRUM DISORDER
Sarah Feuerbacher, Travis Moore and Hannah Gill
Erik was a client enrolled in weekly group counseling with other individuals
with ASD. Erik enjoyed his life, his time in the group, and the friends he had
made in the group, regularly spending time playing video games with them
outside of group sessions. However, Erik frequently discussed how much he
struggled during severe bullying he endured when he was in high school. Erik
reported that he once threatened to tape a girl’s mouth shut because of her
frequent and intense bullying towards Erik. Erik also had a fascination with
everything related to the military, including weapons, fire, and death. As his
time in the group progressed, it became evident that Erik was increasingly
struggling with defining what was reality and what was imaginary as his fas-
cination became delusions, evidenced in group sessions when Erik described
graphic and vivid war scenes he insisted he experienced in real life.
Jason, a 26-year-old who was in the weekly counseling group for individuals
with ASD, also presented with mild depression and reported victimization
of bullying consisting of verbal and physical abuse during his grade school
and middle school years. While Jason was classified as high functioning, the
bullying he received did not assuage simply based upon how highly he was
able to function in grade school, nor did it help in coping with the negative
experience during the aftermath as an adult. Developmentally, Jason’s social
interaction was delayed: he had extremely limited eye contact, his speech was
limited to aphorisms and colloquialisms, and his judgment of others' feelings
and actions were distorted. Contextually, Jason adapted to his surroundings
by learning how to shut himself off to the point of catatonia in an almost
immobile state of inaction and fear. He learned that his theatrical, creative self
was inappropriate not only from peers in school but also from his parents and
psychiatrists. As an adult, Jason’s behavior that was once an adaptive measure
to adhere to social norms became a debilitating condition that prevented him
from establishing meaningful and lasting friendships.
36 Sarah Feuerbacher, Travis Moore and Hannah Gill
during grade school and early high school years can cause long-term loss of
self-esteem, with sensitivity to slights that can lead to problems at home in accept-
ing limit-setting, or with authority later in life. From client reports, those who
graduate from high school and enter the workforce are just as likely to experience
victimization as those who enter college life.
Consequently, bullying is an ongoing problem for ASD individuals regardless of
age, setting, or developmental stage. Furthermore, the bullying endured by this pop-
ulation in childhood can and often affects them throughout their life. In extreme
instances, these individuals can experience post-traumatic stress due to the bullying
they endured (Attwood, 2007).
Bullying and social vulnerability of students with ASD 37
are simply the behavioral expressions of the underlying issues of low self-esteem,
lack of self-confidence, confusion, and hurt in a wounded individual who is expe-
riencing a tremendous amount of suffering. They may react to a depressed person's
low energy with criticism, yelling at the person for acting lazy or not trying harder.
They mistakenly believe that depression is just an attitude or a mood that a per-
son can shake off. Although it's important to be supportive, trying to cheer up an
individual or reasoning with him or her probably won't work to help depression
or suicidal feelings go away. Some people feel that they are weak in some way
because they are depressed, which can even be harmful if it causes them to hide
their depression and avoid getting help. Sometimes even people who are depressed
do not take their condition seriously. Depression can be so strong that it outweighs
a person's ability to respond to reason.
An individual with ASD who has been a victim of bullying and who is expe-
riencing depression will create coping mechanisms and patterns in order to be
resilient; sometimes the ways of coping are helpful, but sometimes they can be
harmful, despite the fact that they have allowed the individual to survive up until
that point. The only way a habit, pattern, or way of thinking and behaving can
be broken is if it is replaced with something else that works better for that per-
son. Therefore, professional counseling and appropriate therapeutic treatments
should be used immediately and consistently when a person is showing signs of
depression and/or thoughts of harming him/herself or someone else.
Beginning the journey to finding an effective and healthier coping mechanism
can be a very scary step for the individual to take, so it will require much patience,
support, and empathy on the part of the significant people in the individual’s life.
People are better able to deal with tough circumstances when they have at least
one person who believes in them, wants the best for them, and in whom they can
confide. The smallest interaction on a personal level can make a big impression and
leave a hurting individual feeling like someone cares, opening the door for them to
return if they need an adult to talk to in the future. Just talking about it may help
the person to feel less alone, less isolated, and more cared about and understood,
and talking may provide a chance to consider that there may be another solution.
Connecting with an individual on the Autism Spectrum can be accomplished using
the following listening techniques:
TABLE 3.1 Steps for reducing bullying victimization in students with ASD
Step Things to do
Step 2. Educate the individual Provide students with ASD education about
student about bullying bullying
Discuss with these students what bullying
behavior entails in a concrete approach
Step 3. Teach how to cope with Introduce these skills explicitly and systematically
and report bullying to adults in in a controlled environment
a controlled environment and Utilize various types of behavior strategies (video
practice modeling, social story, role-play)
Train students with ASD on how to report
potential bullying incidents
Source: Hong, E. R., Neely, L., and Lund, E. M. (2015). Addressing bullying of students with
Autism: Suggestions for families and educators. Intervention in School and Clinic, 50(3), 157–62.
doi:10.1177/1053451214542047.
Preparing students with ASD for bullying situations begins with education and
is maintained through training both students and teachers how to respond to bul-
lying or disrespectful behavior. Hong et al. (2015) constructed a step-wise model to
prevent and deal with victimization in a school setting (see Table 3.1):
Individuals with ASD and their caregivers can begin to decrease the risk of ASD
victimization and bullying by becoming educated about bullying, learning how to
cope with bullying, teaching controlled generalization, implementing a monitoring
system at school, and planning and/or participating in a prevention program.
40 Sarah Feuerbacher, Travis Moore and Hannah Gill
rate their level of engagement during the group session, and identify other
characteristics relating to the weekly group session.
Amelia initially came in for help with identity confusion, gender dysphoria,
and shame resulting from a lifetime of rejection, stigmatization, and bullying.
Amelia participated in the specialized technology program institute across the
courtyard from the university counseling clinic, and she sought services at
the clinic to work on coming out to peers and staff as transgender transition-
ing from male to female. Along with concurrent individual therapy, Amelia
joined the all-female group that focused on social skills, teambuilding, and
emotionally focused processing of previous social trauma. Initially, Amelia's
disposition was not unlike many individuals diagnosed with ASD: very little
eye contact, slow speech, and awkward sentence structure accompanied with
tonal patterns that did not match what was being said. Many times the group
facilitators found themselves wondering if they were being made fun of only
to later understand that Amelia's voice reflected her sarcastic humor, and
creative internal world.
(continued)
42 Sarah Feuerbacher, Travis Moore and Hannah Gill
Not unlike many individuals with ASD, Amelia experienced bullying and
marginalization throughout middle school and high school due to her
communication and social deficits. She conveyed to me many times the strug-
gle of social interaction—never implying she did not want to socialize—and
worried that no one would ever accept her. During her individual therapy
time, she worked on what identity meant to Amelia and the issues surround-
ing the intimidating process of coming out to her family and peers. By helping
Amelia understand her own desire for emotional and social growth through
meeting her needs in the present moment during individual therapy, she was
able to create and experience a safe environment that allowed her to feel
comfortable enough to explore a different and more intimidating social
setting: group counseling.
For the purpose of processing their reactions, which could unintention-
ally be hurtful to Amelia, the female participants were told that a new group
member would be joining their group, and this individual was a transgender
woman seeking support and acceptance, just as they all had in joining this
particular group. Reactions were mixed, as with any social setting. However,
upon Amelia entering the group, the participants presented a bracelet to
Amelia tagged with the heartfelt message, “This is your confidentiality brace-
let; we promise to keep this group safe for you.”
While Amelia was in the female group, she found that other group mem-
bers were much more accepting than she originally imagined. Through indi-
vidual and group therapy, Amelia's belief that she was unwanted, abnormal,
and an outcast was challenged, if not contradicted, by being accepted by
both her counselor and other group members. “It's the first time in years I've
felt seen,” she said.
the group sessions, as well as with the facilitators at the conclusion of group
sessions.
The last week of group, Nathan and his fellow members participated in
an activity called “Fill Me Up.” In this activity, group members were asked to
create a paper bag with two sides. On one side of the bag they were asked
to write down the traits that they brought to the group. On the other side
of the bag, group members were asked to write benefits they got from the
group (i.e., things that they learned throughout the group process, things
they gained from being a member in the group, etc.). Nathan completed
this activity two times, at the conclusion of two eight-week group sessions in
which he participated. In both of the times that he participated in the activity,
the one thing Nathan wrote was that what he gained from the group was
friends.
Nathan’s group facilitators believed that being a member of the coun-
seling group was the very first time Nathan felt accepted by his peers and
felt like he truly belonged in a group. At the end of Nathan’s time in group
counseling, he hugged his two group facilitators and told them that he
would miss them. The facilitators believed that this behavior was a direct
result of Nathan’s feelings of belonging and safety within the group, both
with the facilitators and with the group members.
Success stories
The researchers witnessed great success from the counseling groups. The major-
ity of the group members benefitted from participating in group counseling and
reported that they greatly enjoyed their time in the groups. Many chose to par-
ticipate in the groups for several terms, and all participation was self-initiated. The
following case studies are just two of the many examples which show the effective-
ness of group counseling and social inclusion for the ASD population.
Future needs
Further research is needed to explore additional benefits of counseling groups
for individuals with ASD. Literature reviews demonstrate the lack of research
connecting adults with ASD who have experienced bullying and depression, and
strategic, empirically based programming towards intervention for this subject
and population is either unknown or unavailable. Specifically, the researchers
believe it would be worthy to pursue identification of the beneficial piece(s)
of the counseling groups to the participants, be it the increase in social activity,
the comradery of the peer cohort, the accessibility of group facilitators as a sup-
port system, involvement in diverse activities linked to social skill building and
44 Sarah Feuerbacher, Travis Moore and Hannah Gill
teamwork, the healthy release of emotions, the sharing of similar strengths and
challenges, or the process of counseling itself.
The researchers also suggest creating and studying a set, unchanging curricu-
lum to determine if benefits change or increase when the curriculum is repeated
on a consistent basis, and for multiple cohorts of individuals. Such a standardized
curriculum could allow for the dissemination of research and results to a larger
population and help towards the prevention of bullying, depression, and social
vulnerability experiences for all individuals with ASD.
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4
IDENTITY FORMATION IN
INDIVIDUALS WITH ASPERGER
SYNDROME
Caitlin van der Walt
Asperger Syndrome
Around 1943, when Leo Kanner was positing the existence of a syndrome that has
since come to be called Autism, a physician from Vienna published a description of
a similar group of children he had observed in his medical practice who presented
with impaired communication and social interaction skills (Asperger, 1944). This
physician’s name was Hans Asperger. Asperger identified a consistent pattern of
different behaviours and abilities shared by these children that included “a lack of
empathy, little ability to form friendships, one-sided conversations, intense absorp-
tion in a special interest and clumsy movements” (Attwood, 1998, p. 11).
Despite the seminal use of Asperger’s paper throughout Europe in diagnos-
ing and assessing persons with the disorder, the term Asperger Syndrome was not
coined until Asperger’s work was translated into English. Gillberg published the
first diagnostic criteria for Asperger Syndrome in 1989, with revisions in 1991
(Gillberg, 1991; Gillberg and Gillberg, 1989). Later, in 1994, came the recognition
of Asperger’s work by the American Psychological Association with the inclusion
into the DSM-IV manual (APA, 1994) of 299.80 Diagnostic Criteria for Asperger’s
Disorder. Combined with autistic disorder, Rett’s disorder, childhood disintegra-
tive disorder and pervasive developmental disorder not otherwise specified (PDD-
NOS), Asperger’s Disorder was now formally a part of the spectrum of Autism
disorders.
The criteria for Asperger’s Disorder or Asperger Syndrome (AS) revolved
around two impairments: first, a focus on social interactions and second, a focus on
restricted and repetitive behaviour movement patterns, with the remainder of the
criteria ruling out Autism as an option (APA, 1994). The social interactions cate-
gory highlighted an inability for individuals to display appropriate social behaviours,
such as eye contact, appropriate facial expressions and the use of other non-verbal
46 Caitlin van der Walt
What is identity?
Identity is a complex and ongoing process that provides insight into a person, deter-
mining how others view them and how they come to understand and view them-
selves (Shakespeare, 1996). A social constructivist view of identity believes a person
demonstrates altered identities specific to their associated social relationships (Bagatell,
2007), indicating that identity is a continually changing notion, highly dependent on
one’s social environments. Further, it is believed that an individual’s self-concept is
influenced, both negatively and positively, through their memberships with various
groups (Turner, 1999). Holland, Lachicotte, Skinner and Cain (1998) presented the
idea that individuals have the capacity to act upon their own world and become
“social products” and “social producers” of their lives (p. 42), highlighting the power
and control one can have in the formation of their identity. This notion of identity
emphasises the complexity of the ongoing social processes involved in the formation
of identities, as they are continually constructed, challenged, adjusted and changed.
Giles (2014) suggests that individuals who believe their diagnosis forms part of
their selfhood and who believe they are at risk of losing their diagnosis may be fearful
Identity formation in individuals with AS 47
of the loss of their identity. Individuals with AS, for example, believe their diagnosis
gives reason for their noticeable differences and ‘abnormal’ behaviours. Macleod,
Lewis and Robertson (2013) highlight the positive connection between individuals
and their AS identity, stating that individuals expressed a desire to understand and
gain knowledge about themselves, which was made more accessible through their
diagnosis of AS. Furthermore, Fein (2012) found participants in his study considered
AS to be a part of who they were rather than a separate disease or illness, with the
strong belief that without their diagnosis they would not be the same person.
The stigma and discourse imposed on groups by those outside of the group
may affect the process of identity formation due to the negativity it can create.
Nario-Redmond, Noel and Fern (2013) suggest that stigma and discourse can pose
challenges to maintaining a positive self-identity, particularly when the individual
is concerned about their differences. Although this stigma and discourse may be
deemed as powerful, it does not dictate one’s identity (Bagatell, 2007). Ellemers,
Spears and Doosje (2002) suggest that if a group is devalued or stigmatised in soci-
ety, the social identity of the individuals associated with the group is weakened and
jeopardised.
Limited attention has been given however to the importance of social identity
in individuals diagnosed with AS. Charland (2004) states that as quickly as a psychi-
atric label can be bestowed on an individual, it can be taken away or significantly
changed, creating concerns for individuals who highly identify with their diagnosis.
Several studies have looked at the role and power a diagnosis has in the construction
of a person’s identity, with findings indicating a strong sense of identity formation
around the diagnosis of AS (Giles, 2014; Macleod and Johnston, 2007; MacLeod
et al., 2013). Beart, Hardy and Buchan (2005) argue the power of label identity
has been overlooked in previous years, stating disability identity has “. . . become
a person’s primary identity, over-riding other identities. . . ” (p. 49). This aspect of
identity leads to the question as to how changes to the DSM-IV (APA, 1994) diag-
nostic criteria may affect the identity of individuals with a current diagnosis of AS.
In order to gain an insight into the meaning of AS identity formation, indi-
viduals with AS need to be provided the opportunity to voice their experience
and journey to self-acceptance. Shakespeare (1996) likens one’s identity to the “. . .
stories we tell to ourselves and to others” (p. 95), emphasising the necessity to
provide the individual with an opportunity to tell their story. Recent research
involving individuals with AS have moved toward involving more interviews with
the individuals to provide greater insight and understanding of the experiences
and journeys associated with their diagnosis of AS (Harrington, Foster, Rodger
and Ashburner, 2013). Dhunpath (2000) suggests that this insight can be achieved
through the implementation of a life history framework, which can provide a more
in depth and intimate account of the individuals’ experiences, viewing the topic
from a personal perspective. The remainder of this chapter will discuss outcomes
from a small research study that investigated the connection one individual had
with his AS diagnosis and the potential effects the changes in diagnostic criteria
found in the DSM-V may have had on his self-identity.
48 Caitlin van der Walt
Methodology
The study employed a life history framework in an attempt to gain a greater insight
into the formation of an individual’s identity. The life history framework high-
lighted the importance of considering personal recounts and narratives in estab-
lishing the relationship between identity construction and a diagnosis of AS. The
value life history methodology contributes to qualitative research is supported by
Dhunpath (2000), who states that one’s life is constructed through narratives, rep-
resenting lived experiences through personal stories.
Participants
Two participants were involved in this study, Anne and Max. Max was a 14-year-old
male with a diagnosis of Asperger Syndrome. Max had known of his diagnosis for
several years. Max lived at home with his parents and a younger sibling. He attended
his local mainstream secondary school, a place he liked. His mother, Anne, was also
interviewed to corroborate and provide extension to Max’s responses.
Procedure
Studies exploring identity utilise interviews as the foundation of their research,
allowing the perspectives and experiences of the individuals to be conveyed and
considered (MacLeod and Johnston, 2007). To this end, two interviews were
conducted with Max, both in his home, and one interview with Anne. All were
audio-recorded and later transcribed prior to analysis. The results were analysed
using grounded theory analysis methods, a systematic, qualitative procedure that is
used to generate a theory to explain a concept or process about a particular topic.
This process of analysis is particularly significant and useful for topics around iden-
tity, self and meaning (Charmaz and McMullen, 2011) making it relevant for the
design of this study. Interviews were coded, identifying the concepts, actions and
processes highlighted by the participant in each of the interviews (Stern, 1980).
Data were then synthesised into broader categories. By determining which catego-
ries were the most significant in the data, together with evaluating the content of
the subsequent categories (Harry, Sturges and Klingner, 2005), the most predom-
inant and significant categories that emerged were social identity and self-identity.
Findings
Max’s account highlighted how his past experiences, revolving around his AS diag-
nosis, shaped his identity, both personally and socially. The findings suggested a
strong relationship between Max’s identity and his diagnosis of AS, with him stat-
ing, “it [AS] is what I use to define myself . . . it is who I am.” This strong sense of
connection with his diagnosis was further highlighted through his response toward
the suggestion of the possible removal of his diagnosis of AS. Max replied, “. . . to be
Identity formation in individuals with AS 49
honest with you I don’t think you could take it away, it’s what I use to define
myself.”
Self-Identity
Throughout the interviews Max expressed pride in his diagnosis and made strong
connections between AS and his self-identity. He reported considerable signifi-
cance on the importance of his diagnosis of AS, making many references to it as
part of who he is and what it means to him, “. . . I am proud of it . . . it’s just who
I am.” Anne, Max’s mother, affirmed that Max “. . . wears the badge [of AS] with
pride . . .” and is not ashamed of who he is, enjoying the fact that he is an individual
and not feeling the pressure of having to fit into the ‘teenage norm’. By embracing
his individuality, Max displayed a sense of self-worth that illustrated how he has
positively embraced his diagnosis of AS, suggesting that it is what makes him, him.
The acceptance of and comfort with his AS diagnosis, displayed through Max’s
responses, appears to stem from his understanding of self. These findings support
those of Punshon, Skirrow and Murphy (2009), whose results indicated the neces-
sity of gaining self-understanding for individuals with AS from an early age, and
the subsequent contribution of this self-understanding to the formation of a pos-
itive self-identity. It is apparent that Max’s diagnosis of AS provides for him an
explanation for his differences, equipping him with the knowledge required to be
accepting of and at peace with himself. Through this understanding Max is able to
form his identity, knowing how he ‘fits in’ and how his role in society may differ
compared to the role of others around him. In his interview, Max stressed that his
diagnosis helped him on his journey to accepting himself as he believed it gave
him reasons as to why he behaved the way he did, stating, “. . . it [AS] helped me
understand myself a bit better.”
It is through understanding and acceptance that individuals form their self-
identity, suggesting that AS is not simply something an individual has, but rather
a fundamental part of who they are (Bagatell, 2007). Max still recalls how he was
told about his diagnosis: “. . . technically I learnt about it one day before school
when I was complaining about my friends. . . .” Anne supports this recall of events,
remembering how she told Max about his AS after a friend was not interested in
playing with him anymore. Both Max and Anne implied that this event supported
the development of his identity as he learnt it [AS] was part of him, providing him
with a reason to be proud of his individuality.
When referring to himself, Max displayed confidence in who he was and his
diagnosis of AS, which Anne confirmed, stating that he is very secure and com-
fortable about his individuality and differences. Max highlighted his enjoyment
of being different, expressing, “. . . often I really enjoy actually being my own sort
of person . . .” which further emphasises the value he places on his self-identity.
Despite the pride and acceptance displayed when referring to himself and his per-
sonal identity, it was evident that at times Max’s pride and comfort did not filter
50 Caitlin van der Walt
into his school life. This raises questions around his social identity and how he
perceives himself in this social environment.
Social identity
The ignorance of peers toward AS caused the most upset and concern for Max.
Throughout the interviews, the concern of peer ignorance and prejudice toward
AS, and therefore him, was highlighted by Max, implying his pride and acceptance
of himself was at times threatened by social reactions. It was clear that his social
identity was at times jeopardised due to the reactions of peers around him. Ellemers
et al. (2002) offer support, suggesting that individuals are more likely to identify
with a particular group if people around them have a greater understanding of the
group’s context. When Max was questioned about whether or not he liked having
a label of AS he responded, “I like it, but I wouldn’t tell my friends about it.” This is
a personal choice that has been shaped by his past experiences, which can be con-
cluded from his response, “. . . I don’t exactly like being insulted because of people
who are ignorant. . . .”
When interviewing Anne, it was apparent Max had been concerned about the
stigma associated with AS. Anne suggested that Max’s social insecurities derived
from the ignorance displayed by peers “. . . who tease him about his syndrome, often
calling him ‘Downs’ as Down syndrome is the only syndrome they are aware of. . . .”
This supports Max’s concerns that the ignorance of his peers is what leads to the
prejudices that are formed against him.These experiences have seen Max not being
true to himself in social situations, with Anne reporting, “. . . I can see it [insecurity]
when he says hello to peers as he is not himself and is trying to put on a face to fit
into the social norms. . . .” Punshon et al. (2009) found the same concerns, suggest-
ing that due to past social events where bullies targeted them, participants became
withdrawn from social interactions as a form of coping with the social pressures.
Campbell, Ferguson, Herzinger, Jackson and Marino (2004) indicated the need for
peer awareness and knowledge of AS in order to create a positive and inclusive
environment for individuals with AS, with their findings indicating a significant
difference in peer attitudes as a result.
Discourse that creates stigma often associated with AS causes further opportu-
nity for prejudices to be formed about it. Throughout the interview, Max com-
pared the prejudice of peers against AS to that of racism, expressing that “. . . being
insulted like that [due to ignorance] is sort of like racism to me”. This sends a
powerful message as it provides a comparison for people to engage in and relate to.
Max continued to state, “racism is relevant in schools . . . drug education is relevant
in school . . . why can’t Asperger syndrome education be relevant you know. . . .”
Anne explained, “. . . he has spoken to one of the psychologists at the school and has
suggested that AS should be covered during personal and health education, just like
racism is discussed, as he believes this may create a better awareness and therefore
suppress the ignorance.”
Identity formation in individuals with AS 51
The analogy to racism was further expressed through Max’s desire for people to
understand and accept his diagnosis. Throughout the interview, techniques such as
questioning and relatable comparisons were used by Max to ensure the interviewer
had a clear understanding of how he felt. When explaining the prejudices people
had against him he asked the question, “Would you like it if someone insulted your
country in front of you?” This drew the researcher in, allowing them to connect
with the point Max was trying to make, emphasising the importance for others to
understand him and accept his differences for whom he is. MacLeod and Johnston
(2007) agree, reporting that individuals with a diagnosis have a desire to share their
experiences with professionals, thus providing an in-depth understanding of how
a diagnosis of AS contributes to their identity and what challenges they are faced
with as a result.
Although Max highlighted a range of concerns regarding the acceptance of
AS amongst his peers, it is evident that his connection to AS and his identity is
remarkably strong. During the interview he repeatedly stated, “it is what I use to
define myself . . . how would you define me, how would you define my differ-
ence?” This response further illustrates the role AS has had in Max’s journey of
self-understanding.
Through this current study, it can be implied that the subset of individuals who
will no longer be diagnosed with AS under the DSM-V may be impacted emo-
tionally due to a lack of understanding regarding their differences, impacting the
formation of their identity.
Future directions
This study involved a young adult and his mother. Conclusions about a whole
population cannot be drawn as the findings are only based on one individual’s
experiences (Zhan and Ottenbacher, 2001). Further studies in the field focusing on
multiple participants will help overcome these limitations, allowing more general
conclusions to be drawn. Due to the limited availability of studies associated with
identity and AS, further research concentrating on identity formation in individuals
with AS is needed. A larger scale study will allow greater generalised conclusions to
be drawn around identity formation.
Conclusion
Max’s explanations and reflections are of significant value to gaining insight and
understanding of individuals with AS. Due to the changes in diagnostic criteria,
it is important to have an understanding of how a diagnosis of AS has facilitated
in the construction of this subset of individuals’ identity and what the impacts
may be without this diagnosis and label. The findings indicate a strong connection
between a diagnosis of AS and identity formation, with the diagnosis allowing Max
to become accepting and proud of his individuality.
52 Caitlin van der Walt
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PART II
Social inclusion across the
educational environment
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5
SOCIAL INCLUSION IN THE
EARLY YEARS
Janice K. Lee, Jaclyn Joseph, Phillip Strain and Glen Dunlap
the EI/ECSE literature (Barton and Smith, 2015). Odom (2000) notes that early
childhood inclusion should be measured at the child level in regard to outcomes
and also at the classroom and program level to ensure that children with disabilities
are attending high-quality inclusive settings. To measure the quality of inclusion at
the child level, it is recommended that practitioners use data collection for multiple
purposes (e.g., assessment, progress monitoring, decision making, tracking instruc-
tional opportunities) (Barton et al., 2015). To measure the quality of inclusion at
the classroom level, varying measurement tools have been discussed in the litera-
ture (e.g., Irwin, 2009; Soukakou, 2012; Strain and Bovey, 2011). These classroom
evaluation tools rely on the foundation of quality early childhood programs that is
provided by the developmentally appropriate practice (DAP) framework and also
on the evidence-and-practice-based recommended practices outlined by the DEC
Recommended Practices for young children with disabilities (Barton and Smith,
2015; Copple and Bredekamp, 2009; Division for Early Childhood, 2014). Barton
and Smith (2015) summarize eight evaluation tools that practitioners and programs
can use to measure the quality of inclusive early childhood classrooms and four
commonly used checklists for inclusive data collection at the child level.
Another common feature is that all three of the models are aligned with a
behavioral-educational orientation.That is, the emphasis of all three programs is on
systematic instruction in order to build social skills and positive peer interactions.
It is important to emphasize, however, that the instruction is embedded within the
overall context of high-quality early childhood education programs designed to
benefit all of the participating children, regardless of whether or not the child has a
disability. Furthermore, the instruction that is provided for the children with ASD
is generally delivered in a manner that is consistent with the procedures used for
all of the children. Although based on behavioral principles and aligned with the
discipline of applied behavior analysis, the instruction is naturalistic and delivered
in the ongoing context of group activities.
Even though instruction and support for the children with ASD is delivered in
the ongoing classroom context, the interventions are individualized. Children with
ASD in all three programs have individualized plans for instruction in all relevant
areas and, in particular, in social and communication development.Teachers meet to
design, monitor, and refine individualized instructional strategies on a regular basis.
An associated feature is that data are collected and summarized on the key target
behaviors for each child. Progress is assessed frequently and instructional programs
are modified if the data indicate that anticipated gains are not occurring at a desired
rate. All three programs rely on data collection and data-based decision making.
Aside from these shared characteristics, there is perhaps one overriding feature
that may be considered to be necessary for an effective, inclusive classroom model.
That feature would be a concerted dedication to achieve a fully inclusive and fully
participatory educational experience for all children, with a focus on the develop-
ment of positive peer relationships. All three models share this kind of commitment,
and it is this common mission that is the foundation of successful inclusion for
children with disabilities.
services. Indeed, many programs for young children with ASD purport to be doing
this very thing … preparing them for inclusion. However, we are aware of no data
suggesting that this happens with any regularity. In fact, the opposite is demonstra-
bly provable. That is, once children begin their education in a segregated setting,
they stay there (Strain, 2015). A second pervasive myth is that children with ASD
cannot be provided with a sufficient intensity of instruction in inclusive settings.
While embedded instruction has at least a three-decade research history, there are
few examples in the literature where instructional opportunities have been tracked
for children with ASD. Finally the myth that inclusive environments are “too stim-
ulating” is pervasive, notwithstanding the fact that there is not one study of which
we are aware to directly support this myth. Of course, the primary basis of the “too
stimulating” myth comes from the sensory integration movement, which has yet to
yield evidence of effectiveness or relevance for young children with ASD (Barton
et al., 2015).
Finally, we think that preschool inclusion needs to be thought about as the
launch point and not the end point for inclusive opportunities. We base this idea
on results from a follow-up study on LEAP participants (Strain, 2015). Here, chil-
dren with ASD were followed for four years after the preschool experience. Based
largely on school district policy, some children were enrolled in developmentally
segregated kindergarten classes and then stayed there for the follow-up period. By
contrast, other children who were matched in level of Autism symptoms to the
developmentally segregated group were enrolled in inclusive kindergarten settings
and they remained in that type of setting for four years as well. At third grade, the
two groups differed fundamentally on measures of Autism symptoms, academic
achievement, language skills, and social skills, all heavily favoring the children who
experienced a continuation of inclusive education.These data suggest that the ben-
efits of inclusive settings for children with ASD may, in fact, be underestimated if
inclusion is limited only to the preschool years.
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6
SOCIAL INCLUSION IN THE PRIMARY
SCHOOL YEARS
Alice Jones Bartoli
Introduction
The primary school years see a marked development in the importance of peer
relationships. The period of middle childhood and early adolescence is character-
ised by both new demands and opportunities for social and emotional growth, and
children’s conceptualisations and reliance on friendships for psychological support
has been demonstrated to develop alongside this. Young children tend to under-
stand friends in terms of activity sharing, and discuss friendships in rather concrete
terms. These pre-school friendships are typically less stable than later friendships,
but nevertheless appear to form an important basis for development of future
friendships. During the primary school years, an increasing proportion of children’s
social interactions involve peers. Peer groups increase in size, and require less close
adult supervision than for younger children. It is also increasingly the case that chil-
dren interact with their peers online, or by telephone.
Peers provide opportunity for socialisation, through shared knowledge and expe-
rience about emotions, reciprocity, cooperation and behavioural norms. Towards
the end of childhood, friendships are furthermore characterised by an increase in
shared intimacy. This is reflected in the activities typical of children across their
primary school education, from spending most of their time in active or pretend
play in the early years, to engaging in organised physical activities, or talking and
gossiping in middle childhood and pre-adolescence. Having one or two best friends
is of great importance to psychological adjustment, and can buffer the impact of
stressful events as well as positively correlating with self-esteem and negatively with
anxious and depressive symptoms (Newcomb and Bagwell, 1995). It is clear then,
that social relationships across primary school serve important purposes for social
and emotional development.
72 Alice Jones Bartoli
Children with Autism often find these shifts in the expectations and activities
associated with friendships difficult to navigate. It is common to read research that
suggests that children with Autism experience social exclusion, bullying or some
other dissatisfaction with their relationship with their peer group. This chapter will
consider the social inclusion for children with Autism during the primary school
years from several angles. Firstly, it is important to consider the context that children
with Autism are educated in, and how far learning disabilities and other common
comorbid conditions might impact on the development of social relationships. It is
also pertinent to think about how children with Autism conceptualise friendships,
and what they want in terms of social relationships with their peers during the
primary years. We will discuss the prevalence and experience of bullying, and think
about how typically developing children might consider their peers with Autism
when making a decision about whether they want to include them in their social
activities. This chapter will also consider the voices of parents and teachers, who
are intricately involved in developing the social lives of the children in their care;
alongside that, we will consider the evidence base for interventions.
Inclusion of children with Autism in mainstream classrooms has become
increasingly prevalent. International educational policy advocates inclusion of stu-
dents with special educational needs (SEN) in mainstream contexts and in many
countries, schools are required to make adjustments to enable children with SEN
to be included in school life. In the UK, around 73 per cent of children with
an Autism diagnosis and in receipt of special education support are educated in
mainstream schools (DfE, 2015). Education provision for children with Autism in
mainstream schools is typically characterised in one of two ways: children attend
their local school and are provided with additional support, typically from a teach-
ing assistant, a visiting Autism specialist and, possibly, therapy input from health
professionals; alternatively, children may be placed in a mainstream school which
has its own specialist unit or resource base for students with Autism. Different
amounts of time may be spent in the resource base or mainstream class depending
on the needs of the students, and the philosophy of the school. Although there
may be concerns about children being included in mainstream schools, but being
taught separately, resource bases can offer a student a gradation of inclusive expe-
riences appropriate to individual need and extend this with training and support
for mainstream staff (Frederickson, Jones and Lang, 2010).
Some children with Autism also have a learning disability characterised by low
cognitive ability, and many more have difficulties accessing the school curriculum
in different ways (Estes, Rivera, Bryan, Cali and Dawson, 2010). Estes et al.’s study of
nine-year-old children with Autism demonstrated that academic achievement was
often less than would be expected given their cognitive ability. They reported that,
after controlling for cognitive ability, social skills measured at six years of age were
the best predictor of academic attainment at nine years. Regardless of a child’s abil-
ity, school is often a challenging place for children with Autism. As well as difficul-
ties with social interactions, differences in sensory processing mean that it is often
difficult for a child to manage the demands of a busy classroom. In a study carried
Social inclusion in the primary school years 73
out by Ashburner, Ziviani and Rodger (2008), children with Autism were found to
have a greater number of sensory processing difficulties than their typically devel-
oping peers. These children were reported to have difficulty paying attention to
verbal instructions in the presence of background noise and those with atypical
sensory-seeking behaviour were more likely to show academic underachievement.
Sensory processing difficulties were associated with inattention to cognitive tasks
and hyperactive and oppositional behaviour – all likely to impair a child’s ability to
optimally access curriculum, and meet their academic potential. Sensory process-
ing difficulties also have the potential to impact on social participation. A child’s
capacity to be involved in play and social activities is an important part of childhood
learning. Atypical profiles of sensory processing have been demonstrated to nega-
tively predict social behaviour (Hilton et al., 2010). It may be the case that under-
standing more about the potential role of sensory processing in a child’s ability to
interact with their peers may provide a further avenue for intervention.
Friendships
Individuals with Autism are frequently perceived as having difficulties making and
maintaining peer relationships. Before considering outcomes related to social inclu-
sion for children with Autism, one of our first points of investigation should be about
what the children themselves perceive as successful social relationships, and what is
desirable. One systematic review (Petrina, Carter and Stephenson, 2014) consid-
ered 24 studies examining the nature of friendships for children and adolescents
with Autism.This review suggests that although most children with Autism consider
themselves, or are considered by others, to have at least one friend, they tend to have
fewer friendships (and of shorter duration) than their typically developing peers.
Children with Autism are also reported to spend less time with peers outside of
school, and spend the majority of the time that is with peers playing video games,
doing physical activities and watching television. Petrina and colleagues also report
that friendship quality, as reported by children with Autism, is routinely lower than
for typically developing peers. However, children with Autism have been shown to
benefit from having friendships with typically developing peers (Bauminger et al.,
2008).These friendships have been found to be more durable and stable than friend-
ships between two children with developmental disabilities. They also seemed to
have more fun together, were more responsive to one another, and demonstrated a
more complex level of coordinated play. It may be plausible that the ability to make
and maintain friendships with a typically developing peer rely on a multitude of fac-
tors, including the children’s own social and emotional abilities, and teacher/parent
support. However, it is likely that children who do have friendships with typically
developing children have increased opportunities to be involved in more complex
social and play situations, which offer useful learning opportunities.
Observational studies of children with Autism suggest that they spend more time
playing alone, and less in reciprocal interactions or initiating and responding to social
interactions with others (Bauminger, Shulman and Agam, 2003). However, more
74 Alice Jones Bartoli
recent observational research by Calder, Hill and Pellicano (2013) reported that the
majority of children with Autism in their study were observed to engage in high-
level social play, and made interaction initiation attempts with peers. This study also
reported that the majority of observed interactions were positive for the child with
Autism. Other observational studies of children with Autism in social situations have
attempted to capture specific areas of difficulty. For example, Attwood (2000) has
noted that children with Autism have difficulties sharing interests or enjoyment with
others and also find it difficult to join a group of children already at play. He also sug-
gests that children with Autism have difficulty ‘hosting’ play dates, manifested in their
inability to accept suggestions from the visiting peer, behave in a reciprocal manner,
share with the play mate and show sufficient conflict resolution skills.
Calder et al. also considered multiple perspectives on the friendship expe-
riences of primary-school age children with Autism: themselves, parents and
teachers. Children themselves were able to name a small number of children whom
they considered to be friends, and described friends in terms of companionship
(for example, ‘We play games with each other’ [p. 306]). With regards to under-
standing an affective component to friendship (e.g. support and mutual affection),
results were somewhat more mixed. Some children described friendship as being
supportive and caring, others did not – appearing emotionally disconnected, and
suggesting potential misunderstanding about the nature of friendships (for example,
‘[They’re my friends] because I try to catch them’ [p. 306]). Children also discussed
their difficulties with friendships, including feeling confused about whether they
were friends with other children or not, and sometimes a desire to be alone. Some
children discussed feeling left out and lonely as a result of not being involved in
certain friendship groups or social activities.
As a comparison, Calder et al. (2013) report that parents perceived their
children’s friendships as being different to those of other children. Some parents
suggested that their children often seemed to prefer to be alone, and that their level
of maturity compared to their peers impacted on their ability to understand the
subtleties of social interactions. Other parents talked about the attitudes of other
children being potentially problematic. Although few related incidences of bully-
ing, some parents talked about peers taking on a ‘caring’ role, rather than that of a
reciprocal friendship. Parents also talked about their own role in developing friend-
ships for their children, including providing direct instruction, facilitating contact
through inviting children over to play, and joining clubs and doing extra-curricular
activities (although some found this caused further difficulties for the children).
In a further study, Petrina, Carter and Stephenson (2015) spoke to parents of pri-
mary-school-age children with Autism about their priorities about friendship and
skills development. Parents reported being most concerned with the development
of social and emotional skills, with friendships coming third, although it seems sen-
sible to consider that friendships may be a natural consequence of well-developed
social and emotional skills.
The teachers’ interviews also discussed the nature of adult support required
for children with Autism to be involved in social interaction. Teachers discussed
Social inclusion in the primary school years 75
noticing that periods of unstructured play could be particularly difficult, and that
they were frequently involved in encouraging their peers to think about how they
could include them. Teachers also considered how they balanced the needs and
desire of the children to sometimes be with others, and to sometimes spend time
alone.Teachers reported children with Autism to be ‘on the periphery of friendship
groups rather than being either socially involved or socially isolated’ [p. 308]. One
of the key difficulties in social interactions appeared to be the lack of understanding
or ability to apply social rules, including negotiation, reciprocating concern and
care and playing within the rules of a game. Teachers’ views on supporting children
with Autism were also sought by Frederickson, Jones and Lang (2010). Here, teach-
ers reported feeling under-skilled in developing social skills, seen to be critical for
children with Autism. Some teachers discussed the lack of specialist input for social
skills development, while one referred to a lack of time: ‘It would be nice if there was
time for him and the other children to have a social skills section and play games and talk
about rules, etc, but there’s just not the time to do that’ [p. 70].
One other useful method of exploring social inclusion of children with Autism
is social network analysis. Anderson and colleagues (2016) reported on one such
study aiming to examine predictors of social connectivity in children with and with-
out a diagnosis of Autism attending primary mainstream schools. The analyses used
social network modelling, and were able to consider the role of gender, age, class
size and intellectual ability. Information was collected at two time points, around
three months apart. Female students tended to fare better in larger classrooms, while
male students showed greater social fragmentation in the same setting (classes with
20 students or more). During the primary school period in particular, children tend
to prefer to play with children of their own sex. Anderson and colleagues suggest
that for girls, having more female peers to choose from is advantageous, whereas for
boys, whose relationships may rely more on physical and competitive play at this
point, having a large same-sex peer group is less important. This study also noted
the importance of quality of friendships over quantity. Children who had a greater
number of social connections at the first time point tended to show greater social
fragmentation across time compared to those who had a few relationships at the
first time point. It may be worth promoting good quality, solid friendships for chil-
dren with Autism in order for these to be maintained.
predicted prosocial peer engagement. Importantly for children with Autism, the
relationship between effortful control and the first time point and later prosocial
peer engagement was moderated by diagnostic group, suggesting that good effort-
ful control was particularly important for children with Autism (Jahromi, Bryce
and Swanson, 2013).
One theory that has been put forward to explain decisions that children make
about forming social relationships with their peers with developmental disabilities
uses the model of social exchange (Frederickson and Furnham, 2004). This theory
explains motivation for affiliation with others in relation to the perceived costs and
benefits of interacting with them, set against some minimum level of expectation.
Previous research has suggested that typically developing students who experience
the greatest social acceptance are those who represented the highest ‘benefit’ traits
(e.g. co-operation) and lowest ‘cost’ traits (e.g. disruptive or help-seeking behaviour),
while those typically developing children experiencing social rejection showed the
reverse pattern. Frederickson and Furnham (2004) further reported a difference
between the behavioural profiles associated with social acceptance and rejection for
typically developing children, and those with moderate learning disabilities. They
suggested that social rejection was experienced by only those students with learn-
ing disabilities who failed to deliver the minimum benefits expected in terms of
‘benefit’ traits, and a higher than average level of ‘costly’ behaviours appeared to be
discounted. Conversely, those students with learning disabilities who were socially
accepted by their peers were characterized by low levels of ‘costly’ behaviours but
were not expected to offer high levels of ‘benefits’.
This theory was tested by Jones and Frederickson (2010) in an examination of
the factors that predicted social inclusion and rejection in a group of children with
Autism compared to their typically developing peers. In line with other research,
this study reported that, compared to typically developing peers, children with
Autism experienced greater levels of social rejection, and decreased levels of social
acceptance according to sociometric measures. However, of interest to the social
exchange theory, there were some differential predictors of social inclusion. For
example, for typically developing children, being rated by peers as ‘shy’ predicted of
social rejection. The same was not true for children with Autism, where there the
association between these ratings did not differ from chance. This finding can be
explained using social exchange theory in so far as the descriptor used for the peer
nomination of shyness also appeared to be appropriate for children with Autism
(‘this person is shy with other children, they always seem to work or play by them-
selves. It is hard to get to know this person’). It is supposed that children are able to
understand that children with Autism are unable to change this behaviour, and so
they discount it from their cost-benefit analysis of interacting with the child.
themselves to have increased levels of loneliness compared to their peers, and these
feelings of loneliness were also found to relate to anxiety (see Kasari and Sterling,
2014 for a review). Another study focused on the predictors of self-perceptions
of loneliness in young children with Autism (Zeedyk, Cohen, Eisenhower and
Blacher, 2016). Here, 127 children with a diagnosis of Autism aged between 4 and
7 years of age were asked about their experiences of social interaction and relation-
ships at school, and about their feelings of loneliness. Around 30 per cent of chil-
dren reported that they felt lonely at school at least sometimes, but around 90 per
cent reported that they had people to play with (at least sometimes). It may be that
rather younger children with Autism are able to be supported to have successful
interactions with peers, and/or that schools are becoming more well-equipped to
offer that support. It is interesting to note that the greatest predictor of self-reported
loneliness in this young age group was parent reports of social skills. Further sup-
port might well be focused in this area, particularly for young children.
Bullying
One particular concern about children with developmental disabilities who are
included in mainstream school is bullying. Humphrey and Hebron (2015) present
evidence that children with Autism are at particular risk of bullying. Children with
Autism appear to fit a particular socio-cognitive profile that may predispose a child
to being a victim of bullying. Children who have difficulties understanding social
contexts, and who frequently occupy lower social status amongst their peer group
are often those who experience bullying. These children are also those who have
fewer supportive social relationships to draw on during bullying. Children with
Autism are also perceived as being ‘different’ to their peers due to their difficulties
conforming to typical social norms, and to understanding social rules.
Children with Autism appear to experience a higher prevalence of bullying
(Humphrey and Hebron, 2015). One other study focusing on parent reports of
bullying in children with Autism also noted that younger children were at greater
risk of being a victim of bullying (Cappadocia, Weiss and Pepler, 2012). It may be
that bullying of children with Autism decreases during the adolescent years due
to increased empathy in typically developing peers, or increased understanding of
Autism. In incidences of bullying, verbal or relational bullying was the most frequent
type reported. More frequent victimisation was also associated with poorer mental
health outcomes, particularly internalising difficulties, with an incidence of mental
health difficulties 11 times greater in those experiencing victimisation than those
who were not.This study is cross-sectional in nature, so it can not definitively exam-
ine direction of association, but it is likely that there is a bi-directional influence
between poor mental health and victimisation, where already vulnerable children
become targets for bullying, and the experience of bullying impacts further on their
fragile mental health. One further risk factor for victimisation was the level of com-
munication difficulty experienced by the child with Autism. Compared to children
who were not bullied, those who were victimised were approximately five times
78 Alice Jones Bartoli
more likely to have higher levels of communication difficulties. Such difficulties may
place children with Autism at particular risk for victimisation because these diffi-
culties impede their ability to engage with peers and form friendships. Cappadocia
and colleagues discuss these findings in the context of future bullying prevention
and intervention, and suggest that increased knowledge of Autism may help peers to
interact more positively with their peer with Autism, or to be more keen to inter-
vene in episodes of bullying.
Interventions
School-based social skills interventions
A number of child-focused social skills interventions have been developed, and this
chapter will focus on the effectiveness of those that are delivered at school. One
useful meta-analysis of 55 single-subject design studies suggests that school-based
social skills interventions are minimally effective for children with ASD (Bellini,
Peters, Benner and Hopf, 2007). According to this review, school-based social skills
interventions produced low treatment effects and low generalisation effects across
participants, settings, and play stimuli. Moderate maintenance effects were observed,
suggesting that gains made via social skills interventions are maintained after with-
drawal of the intervention. Potential reasons for the poor outcomes associated with
child-focused interventions include a relatively short length of intervention, and
the de-contextualised settings, which are likely to impede generalisability.
Peer-mediated interventions
One method to support the development of friendships for children with Autism
involves peer mediation. As described in Harry’s case study, typically developing
peers are guided and supported to facilitate social skills development through
increased interaction. The effects here are indirect, training peers, rather than the
child with Autism. Peer-mediated interventions have several advantages for children
with Autism. Firstly, schools are able to readily identify appropriate peers to take
part, and these peers may also themselves learn important skills; secondly, peers can
act as models for appropriate social behaviours; and finally, children with Autism can
use peers to practice their developing social skills. One review of this intervention
method (Chan et al., 2009) discusses methods common across peer-mediated inter-
ventions, including reinforcement of desired behaviours, peer modelling, prompt-
ing and verbal explanation and feedback. There are also different reported varieties
of peer-mediated intervention strategies, and this may well be one of its potential
strengths – it is important to be versatile in order for the intervention to match the
needs of an individual child. However, these reviews also note some difficulties with
the current research evidence base that may place a limit on the conclusions that
might be drawn. The first of these relates to collection of information about treat-
ment fidelity. Chan et al. note that many of the 42 studies that they review do not
include information about treatment fidelity, so we can not know to what extent
peers were able to carry out the intervention as planned, or how well they were
supported. One other potential issue is the relatively small number of ‘gold stan-
dard’ research studies conducted on peer-mediated interventions (with many stud-
ies reporting single-subject designs). One recent systematic review of randomised
control trials of peer-mediated interventions reported on just five studies, including
children of primary-school age (Chang and Locke, 2016). The review suggests that
these interventions resulted in participants improving in social skills (e.g. social initi-
ations, social responses, social communication) post-intervention.
80 Alice Jones Bartoli
Conclusion
It is clear that the primary school years are characterised by a steady increase in
opportunities to develop close friendships, and the importance of those for healthy
psychological adjustment. Children with Autism often struggle with aspects of
developing social relationships, resulting in increased prevalence of loneliness and
dissatisfaction. However, school-based approaches to intervention appear to have
some potential for positive change, particularly those that focus on peers, rather
than trying to change the child with Autism themselves.
82 Alice Jones Bartoli
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Social inclusion in the primary school years 83
Introduction
The move from primary to secondary school represents a significant ecological
shift in the lives of all young people. While it often involves heightened anxiety, it
can also be a time of excitement and keen anticipation at the prospect of entering
into a more ‘grown-up’ world and preparing for adult life. Nevertheless, young
people with Autism Spectrum Disorder (ASD) may be particularly at risk at this
time because the key challenges of transition are similar to some of the difficulties
encountered in those with Autism. The inclusion of students with ASD remains
a significant concern for educators, with poor social (e.g. difficulties in forming
friendships and bullying) and academic (e.g. lower attainment) outcomes often
reported. As a result, satisfaction with school and the ability to feel a valued part of
its community may be severely compromised.
The transition from primary to secondary school (henceforth referred to as
‘transition’ in this chapter) has the potential to be a critical point in the education
of young people with ASD, and yet research in this area remains relatively scarce.
This chapter explores transition of young people with ASD by first giving an over-
view of relevant research and then presenting new findings from a mixed methods
multi-perspective study conducted by the author in which a group of students
with ASD (and their typically developing peers) were followed across the transition.
In doing so, its aims were to expand the existing research base and gain a greater
understanding of how students with ASD become part of a new academic and
social community.
Transition from primary to secondary school 85
exploring the experience for young people with Autism. An overview of these
is provided in Table 7.1.
TABLE 7.1 Studies focusing on the primary to secondary school transition of young people
with Autism
Study Setting N Design Data Respondents
collection
(continued)
Transition from primary to secondary school 87
TABLE 7.1 Studies focusing on the primary to secondary school transition of young people
with Autism (continued)
The studies are all recent, conducted in the UK, with relatively small sample sizes,
and a range of methodologies, designs and respondents used. While this represents
considerable variation, there are a number of common themes in the findings which
88 Judith Hebron
The study
This was a longitudinal mixed methods study. Participants were students with ASD
(N = 28, 23 male and 5 female) and a comparison group of TD students (N = 21,
16 male and 5 female), recruited from mainstream and special schools across the
North West of England and North Wales. There were four data-collection points:
Each time point was approximately 6 months after the previous one, covering an
18-month period in total. Students completed the Psychological Sense of School
Membership (PSSM) scale (Goodenow, 1993) as a proxy of school satisfaction
and social inclusion across the transition. This widely used and validated question-
naire permits an understanding of ‘the extent to which [students] feel personally
accepted, included, respected and supported’ (p. 80) at their school. It contains 18
items (e.g. I am included in lots of activities at my school ) which are scored on a 5-point
Likert scale, with a mean score calculated. Questionnaire data were analysed statis-
tically using ANOVAs, and t-tests.2
In addition, 10 concurrent case studies were completed from among the ASD
group and involved students (11 including twins; 9 boys, 2 girls), their parents and
a key teacher. Interview data were analysed inductively and deductively using the-
matic analysis (Braun and Clarke, 2006). This qualitative element was considered
vital in order to give meaning to the responses given in the PSSM questionnaire, as
well as to provide explanatory accounts of the transition from first-person, home
and school perspectives.
positive sense of school membership), but there were very different trends in the
two groups. Findings for the TD group were broad as expected, with students
experiencing less satisfaction with school when first starting in Y7 (T2), but
this stabilised by the end of the first year (e.g. Bloyce and Frederickson, 2012),
with evidence of a non-significant decrease at the beginning of the second year
(T3-4).
Contrary to expectations, students with ASD reported a significant increase
in their satisfaction with school from T1 to T3, in effect demonstrating the
opposite trend to their TD peers. In addition, while there was a significant dif-
ference between the ASD and TD students in levels of school connectedness at
T1 and T2, this was no longer the case at T3 and T4, with the gap narrowing
considerably, although there were indications of it starting to open up again
at T4. There are a number of potential explanations for the positive trends in
the ASD group in this study, and they offer cautious optimism to suggest that
transition to secondary school for young people with Autism may not be the
negative experience it is often hypothesised to be. However, of concern is the
downward trend in scores reported for both groups at T4, after a term of Y8,
with the ASD group reporting a greater fall in scores than the TD group. This
may be indicative of the gradual disengagement found in secondary school stu-
dents as they progress through the academic year groups (Coffey, 2013), but the
finding warrants further exploration. In order to avoid unnecessary repetition,
the PSSM findings are discussed in more detail with the case study findings in
the following section.
4.7
4.6
4.5
4.4
4.3
4.2
4.1
4
Time 1 Time 2 Time 3 Time 4
ASD group TD group
FIGURE 7.1 A graph indicating the differences between groups over time on
the PSSM
Transition from primary to secondary school 91
ATTITUDE
TOWARDS AUTISM
SCHOOL
PRIMARY TO
TRANSITION–
SECONDARY
PLANNING AND RELATIONSHIPS
SCHOOL
MANAGEMENT
TRANSITION
COMMUNICATION SUPPORT
FIGURE 7.2 A graphic representation of the main themes from the thematic analysis
92 Judith Hebron
for parents in particular. Where key staff were able to meet the young people and
their parents pre-transition, this provided a useful point of contact and sense of
consistency.While time-consuming to put together, the benefits of a well-organised
transition plan clearly outweighed any disadvantages and parents felt reassured that
staff had taken time to understand their child.
Communication
This is an important theme in previous ASD transition studies (e.g. Tobin et al.,
2012), and its salience was reinforced in this study.Where effective channels of com-
munication were open between home and school, the transition tended to go more
smoothly. Parents valued what could be considered a ‘primary school’ model of close
communication, and in some cases this was necessary in order to ensure continuity
and consistency between home and school. One parent commented: ‘It’s amazing,
it goes above and beyond really I think what’s reasonable … every day, at the end of the day,
both of them come out to see me and to hand over.’ While this level of support was only
needed in the short term and in a small number of cases, parents valued it highly.
More generally, parents appreciated being able to speak to or email trusted contacts
in the knowledge that they would be listened to and any concerns would be acted
on: ‘I’ve never phoned and not got through or not been able to get hold of them. If I’ve emailed
Transition from primary to secondary school 93
I’ve had a response within an hour or so, it’s really good, it’s very good communication.’
However, this was not a one-way process and teachers also appreciated good com-
munication from parents: ‘Everything we have done, we’ve had parental support for, you
know, we’ve developed over the time a good respect there.’ This sense of mutual respect was
vital, especially for parents who had previously experienced poor relationships with
schools and teachers.
Nevertheless, in a minority of cases, parents felt that some problems could have
been avoided if the school had contacted them. In addition, some parents simply
needed some reassurance early on in the transition that everything was fine: ‘I think
if I phoned up and pressed for answers I’ve got them, but I don’t think, I’ve not even had
anybody phone me just to let me know how he’s getting on.’ This was clearly distressing
for some parents who did not wish to contact the school unnecessarily for fear
of being seen as a ‘nuisance’. Lack of effective communication and understanding
between home and school could mask serious issues, as demonstrated by one case
study student whose transition ultimately collapsed, causing a great deal of distress
to the student and family.
Support
Students
All the students had differing needs, but it was apparent that support would be
required for the majority at least in the short term in order to maximise opportuni-
ties for social inclusion and academic progress. Some students needed high levels of
support (i.e. constant support from a teaching assistant), and this was likely to reflect
a social or emotional need as much as an academic one. Others benefited from hav-
ing a teaching assistant to ensure they remained on task during lessons, or a trusted
member of staff who could to provide advice and support if required: ‘I know I’ve
always got my teaching assistants nearby if I ever need some help.’ This underlines the
importance of school staff knowing the students as individuals with unique needs,
rather than making assumptions about the type and level of support required. Many
of the case study students excelled academically but encountered organisation or
peer group issues. In addition, all secondary school staff mentioned independence
as an important skill for the young people to develop. In ‘best practice’ cases, sup-
port was gradually withdrawn once the student was judged to be ready for greater
independence, although the teaching assistant tended to remain in the classroom as
a discrete support.
Parents
Parents often emerged as needing a high level of support from schools at transi-
tion. This is understandable given the significance of the change and was often
reflected upon in the light of previous poor experiences at primary school or
worries about having to get to know a new staff. Indeed, prior to transition,
parents expressed considerably more concerns than their sons and daughters: ‘It’s
94 Judith Hebron
all change, yeah. Everything changes and to be honest I’m quite freaked out by it. I think
I may be more … more nervous than he is, to be honest.’ Nevertheless, in light of the
positive communication that most parents had with the secondary schools, the
reality of transition tended to be better than anticipated. The same parent later
commented: ‘It was going to be a settling in year and well it hasn’t been a settling in
year it’s been a spectacular year!’
Relationships
New friendships and the peer group
Most of the students had experienced difficulties forming and maintaining friend-
ships in the past, although a number of them had successful primary school friend-
ships, some of which persisted into secondary school. While some of the students
continued to find it difficult to forge new friendships, there was a desire among
all of them to do so, with varying levels of success. However, it was encouraging
to note some very successful new reciprocal friendships for about half of the case
study students by the end of Y7 and into Y8. The common feature here was that
new friends had similar interests and were highly supportive of each other: ‘We’re
all kind of bookworms, so we’re always hanging out in the library together’ and ‘They’re
like really nice to me and they get my jokes, my jokes are horrible by the way!’ Some of
these new friendships were with other students on the autistic spectrum but often
they were not, perhaps reflecting the benefits of having a larger peer group at
secondary school. On the whole, secondary peers appear to have been supportive
and inclusive during the first year of secondary school, although there were indica-
tions that friendship groups were becoming more fluid, and the case study students
increasingly left out. While this may not have been a conscious decision, there was
a growing awareness among the case study students of their ‘difference’ from the
peer group but also a reluctance to be forced to conform to new social conventions:
‘Everyone has their own little clusters, it’s like they’re penguins grouping together into one
corner, it’s very funny to me.’
Bullying
All of the case study students had experienced teasing and bullying at some
point in their primary school years. It was therefore encouraging to note that
levels were no higher and may even have declined from T2 to T4. This would
support the higher levels of school satisfaction reported by the ASD students
on the PSSM as well as Mandy, Murin, Baykaner, Staunton, Hellriegel, et al.’s
(2015a) recent findings. However, approximately half of the case study students
did experience some bullying behaviour from peers in Y7, and this ranged from
physical attacks to social exclusion and teasing. In all cases this was very upset-
ting for the students, but both they and their parents reported that incidents had
been dealt with promptly and appropriately by the schools. Reporting of issues
could be problematic, and in a number of cases it was brought to the school’s
Transition from primary to secondary school 95
attention by peers or parents rather than the students themselves. Clearly this is
an area that warrants continued attention, both in terms of personal awareness
of bullying behaviour, as well as better educating the peer group and ensuring
staff remain vigilant (especially at unstructured times). The students were also
becoming increasingly involved in social media, and it is acknowledged that this
is more difficult to ‘police’ for parents and schools.
Academic considerations
For all of the young people, it took a few weeks to become used to the academic
demands and multiple subject staff at secondary school, although having a complex
timetable did not appear to cause any significant issues. This would suggest that the
highly structured environment of a secondary school may suit many young people
with ASD. Liking or disliking a subject seemed to depend more on the teacher and
his/her style rather than the actual academic content. Homework presented many
challenges for the young people. While some were highly organised and accepted
that homework must be completed punctually, others struggled to manage this at
the end of an already exhausting day, with one parent commenting: ‘It’s battlefield
homework because as far as she is concerned, school is for schoolwork and home is for doing the
things she wants to do at home.’ This issue was circumvented in most cases by the stu-
dents either completing homework during the school day (i.e. at lunchtime) or at
an after-school club. A further issue emerged in terms of some staff not explaining
homework tasks with sufficient clarity for students who interpreted instructions
literally (i.e. it is not enough to ask students to complete something if the teacher
also expects it to be submitted).
96 Judith Hebron
Extra-curricular activities
Similar to previous studies (e.g. Coles, 2014), few of the students in this study par-
ticipated in extra-curricular activities. While this sometimes reflected a reliance on
school transport, it also emerged that the participants needed time to rest after the
social demands of the day. This is an important consideration for schools, as young
people with Autism often manage the school day extremely well but have a result-
ing need to be able to relax and express any frustrations once they are home and
in a safe environment.
Anxiety
Most of the young people in this study experienced high levels of anxiety and/
or frustration on occasion, and at levels that could be considered unusual for a TD
student. Similar to recent research findings (Mandy, Murin, Baykaner, Staunton,
Hellriegel, et al., 2015b), this level of psychopathology was already present in pri-
mary school for many of the students and only increased at transition in a minority
of cases. Staff understanding of triggers and warning signs could defuse potentially
difficult and upsetting situations, and often a clearer explanation or some ‘time out’
in a quiet area was sufficient for students to be able to manage their anxiety. Anxiety
was also experienced in some cases as a result of sensory sensitivities.While this was
something that mainstream schools sometimes struggled to understand, it is pleas-
ing to note that reasonable adjustments were often made (e.g. a pass to go to lunch
early to avoid busy corridors, permission not to wear a school tie).
• There should be more sharing of good practice, as many schools have excellent
transition programmes in place.
• Schools need designated staff members to manage the transition of students
with ASD (as well as other potentially vulnerable students), and this needs to
begin well in advance of the actual transition.
• Bespoke transition plans are essential for many young people with ASD, and
manualised transition interventions that allow a flexible approach (such as
Mandy, Murin, Baykaner, Staunton, Cobb, et al., 2015a) may be very useful.
• Parents and students should be involved in transition planning, allowing ade-
quate time to become acquainted with the new school and key members of
staff.
• It is important to have an ‘Autism-friendly’ environment and ethos at the
school that encourages diversity.
• Schools must ensure adequate training of all staff in Autism awareness in
order to make students feel more valued and accepted as part of the learning
community.
• The social element of transition is vital to its success, as school contributes
significantly to a student’s social and emotional development.
Summary
The importance of a positive transition to secondary school cannot be underesti-
mated, and there is growing empirical evidence to suggest that this is achievable
98 Judith Hebron
for young people with ASD, provided that schools provide appropriate planning
and support. A successful transition is dependent on many factors and these will
be unique to each individual. However, common to all transitional arrangements is
the need to promote social inclusion by ensuring a nurturing ethos that embraces
difference and diversity; getting to know the young person as an individual while
understanding and accommodating their needs; supporting and communicating
with parents; and remaining vigilant to social vulnerability and bullying from the
peer group. In doing so, there is evidence that young people with ASD can quickly
feel a keen sense of inclusion and belonging in their new school, which in turn will
contribute to a positive experience of education.
Acknowledgements
The author’s study presented in this chapter was jointly funded by the Leverhulme
Trust and the University of Manchester Simon Fellowship. Sincere gratitude is
extended to the students, parents and teachers involved in the study, without whose
contribution this research would not have been possible.
Notes
1 In addition to the research reviewed, Mandy, Murin, Baykaner, Staunton, Cobb, et al.
(2015a) present the findings of an intervention study using the original transition study
participants as a control group. The study is not included here as the focus is not on
intervention studies; however, it is recommended for readers seeking an intervention for
transitioning students with Autism.
2 The author can be contacted for further details of the statistical analyses.
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school? Improving Schools, 16(3), 261–71.
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cerns. Good Autism Practice, 15, 70–80.
Dann, R. (2011). Secondary transition experiences for pupils with Autistic Spectrum
Conditions (ASCs). Educational Psychology in Practice, 27, 293–312.
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Transition from primary to secondary school 99
Australia is at a crossroads. As a society, Australians can change the current course for
adults with Autism. Legislation has been enacted, and a national disability insurance
scheme is being rolled out as part of the National Disability Strategy 2010-2020
(Commonwealth Council of Australian Governments, 2011). All of these efforts are
intended to address the increasing social exclusion of people with disabilities. For
adults with Autism Spectrum Disorder (ASD) and their families, entering adult-
hood and leaving school can seem like walking toward a precipice. Young men
and women with ASD often do not know if they will have the needed support to
achieve their goals. Many have already experienced years of social exclusion in their
education experiences and communities (Biggs and Carter, 2016). A clear path to a
more inclusive society is needed with a commitment from the government and our
community members to support adults with ASD. Financial support and removal
of attitudinal barriers are needed so that adults with ASD can attend tertiary edu-
cational institutions, maintain employment, access living accommodations in the
community, and freely participate in daily life.
The purpose of this chapter is to discuss the key theoretical and practical issues
related to post-school social inclusion for adults with ASD living in Australia. Social
capital theory will provide a framework for discussing the intersecting concepts of
quality of life and social inclusion. This chapter will focus on a conceptualisation of
social inclusion that emphasises individuals with ASD having valued social roles
through community participation and interpersonal relationships. Historical and
current efforts in Australia to address issues related to social exclusion and disadvan-
tage for adults with ASD will be explored. Current practices that support or pose
barriers to the social inclusion of adults with ASD in the areas of transportation,
tertiary education, employment, and community living accommodation will also
be discussed.
Post-school social inclusion 101
(Putnam, 2000). Two of the thought leaders in the field of social capital theory,
Putnam (2000) and Coleman (1988), focus on the collective benefits of social
capital that arise from reciprocal actions based on trust and solidarity of people
within a social network. As a society, we can accomplish more than as individuals,
and these benefits accrue through our relationships with others. The third major
leader in social capital theory, Bourdieu, focused on the individual benefit derived
from social capital and noted the negative potential of social capital as a means to
exclude and maintain social inequality (Bourdieu, 1986). The potential negative
implications of social capital can be concerning for people with disabilities, who are
often considered to be in the out-group, whether through bullying, discriminatory
practices in employment, or a lack of options for accommodation in the commu-
nity (Parsons, 2015).
More recently, the development of social capital has been proposed as a means
to promote positive adult outcomes for individuals with disabilities (Trainor,
Morningstar, Murray and Kim, 2013). Secondary school educators need to ensure
students with disabilities have the opportunity to develop social capital during
their transition years. Social capital can be promoted through inclusive education,
development of communication and social skills, expansion of social networks, and
options to become socially connected within their communities (Biggs and Carter,
2016). After high school, the challenges are greater to address the structural, attitu-
dinal, and skill-based issues related to developing social capital for adults with ASD.
By using social capital theory, we can reframe issues from focusing on individual
deficits to further explore and come to understandings about the complexities of
structures and interactions that may inhibit positive outcomes (Trainor et al., 2013).
Quality of life
Social capital theory emphasises the importance of our support network for our
quality of life, and interdependence is a desired outcome for adults with ASD
(Wehmeyer and Schalock, 2001). To quote from the adapted Old English poem
by John Donne, “No man is an island, entire of itself ” (Donne, 2016, Para 1).
Social capital is necessary to achieve and maintain our quality of life (Brown,
Cobigo and Taylor, 2015). While we often focus on developing skills to promote
independence, people live within societies that require and enjoy the reciprocal
nature of our interactions with other humans (Wehmeyer and Schalock, 2001).
Quality of life serves both as an overarching principle for addressing the needs
of an individual through a focus on person-centred planning and as a means to
evaluate the services and providers in achieving the desired outcomes for people
with disabilities (Schalock,Verdugo, Gomez and Reinders, 2016). Quality of life can
be conceptualised as a framework comprised of eight dimensions that encompass
personal well-being (Wehmeyer and Schalock, 2001). These dimensions include
“personal development, self-determination, interpersonal relations, social inclu-
sion, rights, emotional well-being, physical well-being, and material well-being”
(Schalock et al., 2016, p. 2). These core dimensions are considered to be the same
Post-school social inclusion 103
for people with disability as those that are valued by people without disabilities
(Wehmeyer and Schalock, 2001).
Considering the ecological nature of quality of life, strategies for improvement
should include a systems perspective (Bronfenbrenner, 1979), by addressing issues
related to individual, organisational, and societal levels (Schalock et al., 2016).
Understanding the quality of life status of individuals with disability can guide
directions for development through person-centred planning and intervention at
the individual level. Examining quality of life outcomes for adults with ASD can
direct needed changes to policies and programs and improve the attitudes toward
Autism at the organisational and societal levels (Schalock et al., 2016). Quality of
life measures must be sensitive enough to detect changes to ensure that progressive
policy changes are not undermined by an apparent lack of progress (Brown, Hatton
and Emerson, 2013). Subjective indicators of quality of life need to include the per-
spectives of adults with ASD, as the majority of literature has only employed parent
perspectives (Muller and Cannon, 2016; Parsons, 2015).
Social inclusion
Social inclusion can be described as being nested within the broader concept of
quality of life as a desired outcome for people with ASD (Wehmeyer and Schalock,
2001). It has been defined in a variety of ways within the literature (Martin and
Cobigo, 2011). According to the Commonwealth’s Social Inclusion Board, “being
socially included means that people have the resources, opportunities and capabili-
ties they need to” learn, work, engage, and have a voice (Commonwealth Australian
Social Inclusion Board, 2012, p. 12). Simplican, Leader, Kosciulek, and Leahy (2015)
exclude resources or factors that support participation in the community from
their definition and include interpersonal relationships as essential to social inclu-
sion. This chapter will focus on a conceptualisation of social inclusion that empha-
sises outcomes related to individuals with ASD having valued social roles through
community participation and interpersonal relationships, with the understanding
that resources, such as social capital, can mutually reinforce social inclusion (see
Figure 8.1). An increase in social capital can provide additional opportunities to
participate in the community and the interpersonal relationships developed can
further enhance social capital.
Social Social
capital inclusion
FIGURE 8.1 The mutually reinforcing outcomes of increased social capital and
social inclusion
104 Michelle L. Bonati
the provision of personalised supports. A key factor in social capital is the expected
reciprocal nature of interaction; therefore, it is necessary to provide opportunities to
enhance personal growth for adults with ASD, so that they might benefit maximally
from a more inclusive society (Schalock et al., 2016).
Handicapped
International Year Disability Commonwealth
Persons Review & Disability Services
of Disabled Discrimination Act Disability Strategy
the New Directions Act 1986
Persons 1981 1992 1994
Report 1985
Review of Disability
Standards for Willing to Work
Education Final Report 2016
Report 2015
FIGURE 8.2 The timeline of efforts to strengthen human rights related to social
inclusion for people with disability in Australia
were enacted as the national policy to promote social inclusion. The Disability Care
and Support report (Commonwealth Productivity Commission, 2011) provided the
extensive economical and rights based rationale for creating the National Disability
Insurance Scheme (NDIS) (NDIS, 2015).
remove transportation barriers for adults with ASD and improve the experience
of mainstream riders. Some examples include increasing the number of quiet train
cars, clear symbol support for information communication, and visual alerts for
routes during travel.
Tertiary education. For many young adults, the next step after high school is
to enrol in a tertiary education program to earn a degree or qualification (Muller
and Cannon, 2016). Attending university confers additional benefits for develop-
ing social capital through access to social opportunities, employment, and valued
social roles (Senate Standing Committee on Education and Employment, 2016).
Unfortunately, few adults with ASD attend university to be able to accrue these
benefits (Muller and Cannon, 2016). For adults with ASD who can meet academic
standards, many will struggle with the transition to the less structured environment
of a university (Volkmar and Wolf, 2013).
Under the DDA (1992), the Disability Standards for Education 2005 were enacted
to address issues related to discrimination and harassment in education and training,
including at the tertiary level.The key focus of the legislation is on ensuring students
with disabilities can engage in education “on the same basis as” all other students
(Commonwealth Attorney General’s Department, 2005). In the most recent DSE
review (Commonwealth Department of Education and Training, 2015), one of the
identified barriers to tertiary education for adults with disabilities concerns the lack
of explicit focus on transition periods for students.The 2010-2020 National Disability
Strategy describes supporting students’ transition to further education and employ-
ment as a current commitment priority (Commonwealth Council of Australian
Governments, 2011). Young adults with ASD leaving high school are often unpre-
pared for tertiary education due to a lack of transition planning (Cai and Richdale,
2016). Seamless transition to tertiary education requires a collaborative effort between
high schools, outside agencies, and tertiary educational institutions. Two programs
in Australia seek to support the transition process. The Commonwealth’s National
Disability Coordination Officer Programme has regional centres throughout Australia
to facilitate connections between students, support agencies, and educational insti-
tutions in the transition to tertiary education (Commonwealth Department of
Education and Training, 2015).The Australian Disability Clearinghouse on Education
and Training provides online resources to support the transition to tertiary education
for adults with ASD, such as advice for obtaining needed adjustments (ADCET, n.d.).
Employment. The adage holds true, “It is not what you know, but whom
you know” when adults with ASD search for employment. Granovetter’s (1973)
seminal paper described the importance of social networks for employment, in
particular, those of acquaintances or so-called weak ties, to provide important infor-
mation leading to job opportunities. The influence of social capital from family
connections and status is also evident, as adults with ASD, who come from families
with higher socioeconomic backgrounds, are more likely than families with lower
socio-economic status to gain employment (Roux et al., 2013).Too few adults with
ASD can access and maintain open employment. Those that are employed tend to
be in menial, low wage jobs (Howlin and Moss, 2012).
Post-school social inclusion 109
Developing capacity for employment is also an important factor for adults with
ASD to gain social inclusion.Work-related skills can be addressed through systematic
instruction in secondary school and vocational support on the job (Agran, Hughes,
Thoma and Scott, 2016). Greater functional skills, such as the ability to tell time, use
money, and navigate public transportation are associated with a greater likelihood
of gaining employment for adults with ASD (Roux et al., 2013). Engaging in paid
work during secondary school is a significant predictor of employment after high
school (Simonsen and Neubert, 2012). Being able to maintain employment is often
predicated on the quality of a person’s social interactions in the workplace. In a
study examining employers’ perceptions of essential social skills needed for employ-
ment, those related to production skills were valued most highly (Agran et al.,
2016). These include skills such as requesting clarification of unclear directions and
following instructions immediately.
Both the DDA (1992) and Article 27 of the CRPD (2006) address the issue
of prohibiting discrimination in the workplace for people with disabilities, with
Article 27 emphasising the creation of inclusive work environments and having
opportunities for choice in the labour market (UN, 2006, Article 27). Most recently,
the Willing to Work Report produced by the Commonwealth Human Rights
Commission (2016) provided recommendations for addressing the persistent low
employment figures for people with disabilities and consequently high levels of
poverty. Recommendations included developing a national action plan to eliminate
the factors associated with discrimination, including negative attitudes and disabil-
ity stereotypes of community members and employers. Additional efforts to combat
disability stereotypes are needed, such as the Don’t DIS myABILITY campaign,
which highlights how people can create more inclusive communities and informs
the public of actions that are discriminatory (NSW Department of Family and
Community Services, 2016). Unless attitudes of employers and colleagues are posi-
tive, and supports are provided to assist adults with ASD in navigating the complex
social world of workplaces, the desired outcomes of employment related to social
inclusion cannot be achieved.
Community living accommodation. One of the general principles of the CRPD
(UN, 2006) is to ensure, “full and effective participation and inclusion in society”
(UN, 2006, Article 3c). Being able to live within the community in mainstream
accommodation is an objective indicator of social inclusion for adults with ASD
and also a moderating factor for opportunities for community participation and
developing interpersonal relationships. In a recent review of the literature on adults
with ASD, on average, 48 percent continued to live at home (Howlin and Moss,
2012). Although fewer adults with ASD are now living in high congregate care
facilities (Eaves and Ho, 2008), deinstitutionalisation is not complete in Australia.
A newly implemented person-centred approach to disability support that aligns
with the aims of the CRPD (2006) and the National Disability Strategy to pro-
mote social inclusion, choice, and control, gradually began its implementation in
2013 (Commonwealth Council of Australian Governments, 2011). Previously, rigid
block-funding arrangements were established for people with disabilities who required
110 Michelle L. Bonati
additional supports (Dowse et al., 2016). Under the former provisions, adults with
ASD had limited choice in supports or accommodation arrangements (FaHCSIA,
2009). The National Disability Insurance Scheme Act 2013 (Commonwealth
Attorney-General’s Department, 2013), which provides the legislative framework for
the National Disability Insurance Scheme (NDIS), establishes the aims and structure
of this new model for supporting people with disability in Australia.
Although not solely focused on housing support, the NDIS provides adults with
ASD with innovative options for community living that were not allowed under
the former system. Instead of receiving a placement in a group home environment,
where one might live with multiple strangers in neighbourhoods isolated from the
community and services, an adult with ASD could establish one of several hous-
ing arrangements through creative use of individualised funding (YDAS, 2013).
A recent news report described three female friends with disabilities who pooled
their NDIS support plan resources to be able to rent a home together and to flexi-
bly schedule supports as needed (Perkins, 2016). Being able to select whom you live
with, and where, provides options to increase the social inclusion and social capital
of adults with ASD through regular access to community activities that match the
person’s interests and opportunities to extend social networks.
The implementation of the NDIS raises some concerns regarding if there will
be enough highly qualified service providers within this market-based context of
supports. Another issue is whether people with complex needs will be able to com-
pete to receive services from the providers that are available (Dowse et al., 2016).
Individuals with ASD and other related disorders comprise the largest disability
group of NDIS participants, with 31 per cent of the total participants nationally
(NDIA, 2016). The evidence is unclear at this point, but adults with ASD who
exhibit behavioural challenges might encounter barriers to obtaining needed sup-
ports if providers can select from participants who need fewer supports (Anglicare
Tasmania, 2015).
Social inclusion involves a complex set of processes to support community par-
ticipation and development of meaningful interpersonal relationships for adults
with ASD. The extent of a person’s social inclusion also depends on the individual’s
subjective perceptions of their experiences. Social inclusion involves a component
of the broader conception of quality of life and is mutually reinforced through
development of social capital (Simplican et al., 2015). Social capital is a currency
in which we gain access to information and other resources through our social
network of family, friends, colleagues, and acquaintances. Australia has made the
commitment to provide disability support on a national scale through the NDIS. It
is imperative that no matter which way the political wind blows that the financial
commitment to fully implement the NDIS is carried through and the aims of the
National Disability Strategy are realised. The implications of its success or failure
are too great, with so many adults with ASD and other disabilities demanding that
they are no longer shut out from society.
Post-school social inclusion 111
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PART III
Key stakeholders in the
support of social inclusion
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9
THE ROLE OF SCHOOL COMMUNITIES
IN FACILITATING SOCIAL INCLUSION
Cathy Little
Inclusion currently forms the basis of educational policy for students with a
disability in Australia, the USA, the UK, and in most western countries. It can
be argued that there are three principal drivers of inclusive practice: social justice
principles, legislative requirements, and research findings or evidence (Foreman
and Arthur-Kelly, 2008). First, the discourse that argues inclusive education is based
upon the ideals of social justice (Artiles, Harris-Murri and Rostenberg, 2008; Polat,
2011) and appropriate and accessible education for all is, in essence, a matter of
social justice. Internationally, this issue has come into focus over the past cen-
tury with the development of a series of statements and declarations on human
rights, which include the right to education for all (UNESCO, 1990), the rights of
people with disabilities (UN General Assembly, 2007), and the right to equitable
and accessible education for people with disabilities (UNESCO, 1994).
A second factor impacting on inclusion is the governing legislation and legal
policy that mandates the right for all students to access an equitable and appropri-
ate education. For example, changes to legislation in both the United States (e.g.,
Individuals with Disabilities Act (IDEA) of 1990, modified 1997 and amended
in 2004) and British legislation (e.g., 1993 Education Act), saw a move to pre-
scribed educational services for students with disabilities. In 1994 the Salamanca
Statement (UNESCO) called on all governments to adopt an inclusive education
policy through the enrolment of all students in regular schools.
In Australia, the Disability Discrimination Act (Commonwealth Attorney
General’s Department, 1992) and the Disability Standards for Education
(Commonwealth Attorney General’s Department, 2005) set out to eliminate dis-
crimination against a person on the grounds of disability and reinforce the right
to education of students with a disability on the same basis as students without a
disability. Although the Disability Discrimination Act does not specify the s etting
118 Cathy Little
Macrosystem
Exosystem
Mesosystem
Microsystem
Student
Chronosystem
Teacher attitudes
The inclusion of a student with an Autism Spectrum Disorder in a regular class
can often present the class teacher with a challenge to their existing beliefs and
pedagogy and a feeling of uncertainty in regards to instruction and management,
arising as a result of the student’s unique learning and behavioural style. Globally,
research highlights teachers’ concerns of lack of knowledge, lack of support systems
and overriding legislative policy as obstacles to the inclusion process (e.g., de Boer,
et al., 2011; Lindsay, Proulx, Thomson and Scott, 2013). Further research suggests
that general education teachers of students with an Autism Spectrum Disorder have
limited knowledge about the specific traits and idiosyncrasies that define these stu-
dents’ learning styles and behaviours (Boyle,Topping, and Jindal-Snape, 2013; Osler
and Osler, 2008). For regular education teachers with little, if any, knowledge of
these traits, having to teach a student identified with an Autism Spectrum Disorder
can prove confronting and challenging at both a personal and professional level.
Teacher preparedness, knowledge of and attitude towards Autism Spectrum
Disorder have been found to have a significant impact on students’ school
122 Cathy Little
experience. Poor teacher knowledge and attitudes have been reported as having
a significant detrimental effect on students’ participation in school (Eldar, Talmor
and Wolf-Zuckerman, 2010). Positive teacher attitude equates to more successful
outcomes for students. Several studies report how teacher attitudes directly influ-
ence students’ attitudes and behaviour, and the subsequent success of educational
environments in encompassing the principles of inclusion (e.g., Avramidis, Bayliss
and Burden, 2000; de Boer et al., 2011; Sharma, Loreman and Forlin, 2012).
The teacher is the central focus of any classroom. Their attitude toward their
students can be a crucial determinant of the educational experience. When
exploring the study of teacher attitudes, elements investigated at the operational
level include: teachers’ knowledge of Autism Spectrum Disorder; their professional
pedagogy and personal skills and experience; opportunities for professional devel-
opment; the provision of sector level support; and the element of collaboration.
These elements have a two-way effect in that they both inform and affect the
teacher, and in return, are moulded and developed by the teacher in response to
new and changing beliefs and attitudes.With these elements in mind the study pre-
sented in the following sections explores teacher attitudes toward students with an
Autism Spectrum Disorder, with a particular focus on social inclusion.
The study
Methodology
The research design used for the study was a mixed-methods investigative study,
combining the use of surveys and embedded case studies. The Teacher Attitudes
Survey comprised 24, 5-point scale Likert response questions and 10 open-ended
questions, each designed to investigate four constructs of teacher attitude identi-
fied from the literature: attitudes toward inclusion generally, teacher effectiveness,
academic climate, and social inclusion. Five case studies, each involving four ‘key
players’ (a student with an Autism Spectrum Disorder, their teacher, the Principal
and a self-reported peer group) were also undertaken.Within each case study, inter-
views were held with the ‘key player’ participants alongside a series of classroom
observations of the student and teacher. The interviews were administered one-
on-one, researcher to participant, and followed a semi-structured, standardised,
open-ended format, wherein the same questions were asked of all participants
in the same position across each of the five case studies. The focus of classroom
observations was around the observable behaviours of inclusion, social interac-
tion, peer interaction and response to teacher behaviours. Classroom observa-
tions of teacher behaviours were made using the Mainstream Version of the Code for
Instructional Structure and Student Academic Response (MS-CISSAR) instrument of
the EcoBehavioral Assessment Systems Software (EBASS) (Greenwood, Carta, Kamps
and Delquadri, 1993). Student social behaviours were observed using the schedule
based on the model of social interaction (Doble and Magill-Evans, 1992).
The role of school communities 123
Results
Teacher Attitudes Survey
Two hundred and one primary regular education teachers completed the Teacher
Attitudes Survey. Using SPSS, the Cronbach Alpha returned a figure of 0.842 indi-
cating good internal reliability. An initial overview of teachers’ attitudes toward
inclusion, their effectiveness in supporting students with an Autism Spectrum
Disorder, the academic climate in which they were employed, and their under-
standings of social inclusion was made by comparison of means of each of the
research constructs. Results showed that three of the constructs (attitudes toward
inclusion, academic climate, and social inclusion) returned positive mean scores
(Table 9.1).Teacher effectiveness, however, returned a mean score of 1.97, placing it
on the negative side of the scale, indicating teachers felt less positive in supporting
students with an Autism Spectrum Disorder.
The mean score for the social inclusion construct was 3.10, indicating teachers
had an overall very strong, positive response to this construct, and an awareness
of ‘The social well-being of students’ (mean 3.37) and ‘The individual social needs of
students’ (mean 3.07); this also demonstrated their recognition of the importance
of ‘Facilitating opportunities for enhancing social engagement’ (mean 2.88), and ‘Providing
socially inclusive opportunities’ (mean 3.24) for students with an Autism Spectrum
Disorder.
Table 9.1 shows a difference between the mean scores for the social inclusion
(3.10) and teacher effectiveness (1.97) constructs. A paired sample t-test was under-
taken using these two constructs to examine the difference between teachers’ per-
ceptions of their knowledge of and effectiveness in supporting students with an
Autism Spectrum Disorder and their attitude toward the social inclusion of these
students. The paired t-test returned a statistically significant difference between
these two constructs. The mean teacher effectiveness result (M = 1.09, SD = 0.60)
was statistically lower than the mean social inclusion result (M = 3.10, SD = 0.38),
t(189) = −24.99, p < 0.0001 (two-tailed). The mean difference in constructs was
1.12 with a 95 percent confidence interval ranging from −1.21 to −1.03. The eta
squared statistic (0.76) indicated a large effect size, thus indicating a substantive
finding (Field, 2009).
The final analysis performed on the Likert response items was an exploratory factor
analysis, designed to test the assumption that a more positive teacher attitude would
result in greater facilitation of socially inclusive opportunities for students with an
Autism Spectrum Disorder. Results suggested the relationship between teacher effi-
cacy and impact on academic achievement was positive, with the component correla-
tion matrix (Table 9.2) showing a small positive correlation between factors 1 and 3
(r = 0.30). Further, there appeared to be a limited relationship between Factor 2,
which represented social inclusion, and each of the remaining three factors. This
result provides modest evidence that these primary teachers do not perceive social
inclusion as something that needs to be taught within the educational environment.
Further, the lack of correlational evidence between social inclusion and the other
three constructs suggests that the teachers may not have the knowledge to do this.
Analysis of the open-ended items of the survey highlighted the recognition by
primary teachers of the need for ongoing professional development in their quest
to support the inclusion of students with an Autism Spectrum Disorder. A range
of qualitative responses supported the consistently high agreement of partici-
pants with the Likert scale items querying the necessity of professional learning.
Participants indicated a need for professional learning in the areas of inclusion and
provision of social opportunity for students with an Autism Spectrum Disorder
alongside in-services in effective, evidence-based teaching strategies for these
students. In-class support was reported as essential to a teacher’s inclusive practice.
Extra financial support and additional resources (e.g., equipment, technology) were
also perceived as necessary supports for inclusion.
Teachers gave strong, consistently positive responses to items relating to the con-
struct of social inclusion and supported their answers with examples of a range of
social opportunities provided in their classrooms (e.g., groupwork, structured play).
However, contrary to the results of the Likert-scale items where teachers were
positive about their role in promoting socially inclusive opportunities, responses to
the open-ended questions revealed that when planning for their students with an
Autism Spectrum Disorder, teachers reported greater consideration in academic
planning for students than social planning.
TABLE 9.2 Component correlation matrix
Component 1 2 3 4
Case studies
In each of the five case studies, (CS1–CS5) interviews were conducted with the
target student, (S), their teacher (T), a nominated peer group (PG) and the school
Principal (P). Observations were made of teacher practice and student behaviour
in each of the five mainstream classroom settings. Data from the case studies were
broken down and examined in an attempt to provide answers to the research
questions. Using the systematic coding principles of grounded theory developed by
Strauss and Corbin (1998), the coding techniques used included open coding, axial
coding and selective coding. Analysis of findings associated with the social inclusion
construct disclosed an interplay between responses of the adult participant groups
(i.e., teachers and Principals) and the student participant groups (i.e., students and
peer groups) of this study. For the purposes of the following discussion, the focus
will centre on the teacher and Principal key players and draw out convergences and
disparities between their responses.
Both teachers and Principals drew from their previous experiences throughout
the interviews.This experience, combined with their knowledge of Autism Spectrum
Disorder, professional knowledge, and judgements and understandings of effective
instruction were shared with selective codes within the teacher effectiveness con-
struct. Social inclusion was a selective code reported by both teachers and Principals.
Examination of the open codes and categories that conceptualised this code, however,
found greater focus on the barriers to social inclusion and less to the way this con-
struct was facilitated in the mainstream environment.
In their interviews teachers from the case studies said they worked hard to
create an environment of acceptance in their classrooms by “Trying to encourage
everyone” (Case Study 4-Teacher, CS4-T) and “Teaching the class how to get
along and see things through other people’s eyes” (CS2-T). Limited evidence
was found through the observations, however, to support this claim. Observed
instances of positive encouragement directed toward any student in the class
were recorded as occurring less than 20 per cent of the entire observational
period. Further, analysis of the teacher dialogue in the classroom revealed it to be
directed toward academic content rather than social activity in each of the case
study classrooms, with the average percentage of academic directed talk between
the three cases calculated as approximately 78 per cent. Another finding contrary
to teachers’ provision of social opportunities for their students with an Autism
Spectrum Disorder was the seating allocation of their students. Three of the five
students sat alone while the rest of their class sat in small groups. Teachers’ active
support of their students’ preferred isolation appeared to do little to promote
their active social involvement in any way.
Despite reporting groupwork as a strategy for social engagement in their inter-
views, only one teacher, (CS4-T), used groupwork as a mode of instruction in
any of the observational sessions. Three teachers reported their target student was
allowed to disengage themselves from groupwork activities if they chose to, saying
126 Cathy Little
“If it gets too much then she can work by herself ” (CS1-T) and “He doesn’t like
to work with anyone so he can stop” (CS5-T). In Case Study 3, the target student’s
active refusal to participate in any type of group activity was not contested by his
teacher. With recent research citing the benefits of peer-mediated interventions
for students with an Autism Spectrum Disorder (Hart and Whalon, 2011; Locke,
Rotheram-Fuller, and Kasari 2012) the absence of groupwork as an instructional
strategy reinforces the purported limited knowledge base of the teachers in the case
studies regarding effective teaching strategies for students with an Autism Spectrum
Disorder.
In the interviews, all teacher participants reported using social skills programs
in their classes to promote social engagement. However, despite reporting use of
these programs, at no time during the observations was any social skills instruction
observed or alluded to by any teacher participant. This result is at odds with the
literature that reports students with an Autism Spectrum Disorder require direct
teaching of social skills and skills in effective social communication (McGillicuddy
and O’Donnell, 2014).
When asked what they believed social inclusion was for students with an
Autism Spectrum Disorder, responses were varied. Responses from the Teacher
Attitudes Survey saw participants respond, “included in all ways”, and “acceptance
by peers and self ”. Yet the responses from the case studies were less affirming.
When responding to questions investigating social inclusion, both teachers and
Principals predominantly reported perceived barriers to students’ social inclu-
sion, positing the students themselves as constituting a barrier. One teacher
described her student as “all consuming and manipulative”, reporting that her
behaviour “scared away other students”. Another teacher (CS4-T) placed the
onus for social inclusion squarely on the shoulders of the student, mentioning
numerous times how it was up to him to “fit in” and “know how to interpret
the other kids”.
Student factors, such as the behaviour of the student and their perceived abil-
ities, were used as a benchmark for inclusive attitudes. Student participants were
described by both teachers and Principals using labels, such as “that was ASD”, and
“she’s interesting”, as well as their interests, “he likes to play video games”, with the
onus placed on the student with an Autism Spectrum Disorder having to ‘fit in’ to
social situations. The concept of the student with an Autism Spectrum Disorder as
‘different’ when compared to typically developing peers was influential in shaping
attitude.
The role of peers in the social inclusion of students with an Autism Spectrum
Disorder was important. Peers’ knowledge of Autism Spectrum Disorder and the
acceptance of a student for whom he was saw one student from the case studies
socially included with his peers and his classmates. In the remaining case studies,
evidence from teachers, peers and the school Principal indicated that the target
student was shown little acceptance or understanding by peers and remained
socially isolated for the duration of the study.
The role of school communities 127
Discussion
Results found that the attitudes of the teacher played a significant role in the
quality of the interactions within the student’s environment. Within the microsys-
tem, teacher, student and peers were engaged in multiple interactions, both one-
way and bi-directional. Results confirm that students’ social developments were
impacted by these interactions. Positive, reciprocal interactions between the student
and members of their microsystem (e.g., CS4) saw the target student included in
class activities with numerous, positive illustrations of social inclusion. Less positive
interactions (e.g., CS2 and CS3), where the student was rejected by peers, com-
bined with no opportunity for social interaction as facilitated by the teacher, saw
these students experience little to no social inclusion.
The impact of the mesosystem on the student’s social inclusion was also noted. Each
Principal’s interactions with the microsystem of the target student either enhanced or
detracted from their social inclusion. The reported influence of Principals served to
undermine the confidence of the teacher who, in turn, provided limited opportunity
for social inclusion of the student. Both teachers and Principals reported attribution
to the holding of power and control regarding decision-making. For teachers, this was
reflected in the locus of control code, indicating they believed decisions were made for
them, rather than by them (e.g.,“I don’t have anything to do with that.That decision is
made by the execs [executive]” – CS2-T). Principals, however, reported themselves to
be the sole decision-maker in their schools (e.g., “I assess, I look, I make the decision
as to the class they will go into” – CS4-P), perceiving him or herself to be the power
holder:“Most teachers here have given me their power because they don’t know what
they’re doing” (CS1/2-P).
Social inclusion was a selective code reported by both teachers and Principals.
Examination of the open codes and categories that conceptualised this code how-
ever, found greater focus on the barriers to social inclusion and less to the way this
construct was facilitated in the mainstream environment.
Bronfenbrenner (2005) postulated that an individual’s interactions with the
systems that surround them would change over time. Thus, the chronosystem
reflected the cumulative experiences a person has over their lifetime.This reflection
of the influence of time was illustrated in Case Study 4. Both Jacob* (student with
an Autism Spectrum Disorder) and his peers had been friends for many years: “We
started at pre-school together” (Jacob). As Jacob and his friends grew up together,
through their interactions with each other, greater understanding and acceptance
developed between them. This enduring friendship resulted in successful social
inclusion for Jacob a number of years later.
An integral member of the students’ microsystem is the family. Family was a
factor mentioned by all ‘key player’ groups except the peer group. Students reported
their place in the familial structure but did not elaborate in any detail as to the
quality of relationship they had with their family. Principals and teachers men-
tioned the role of families in the school community, but did not detail the nature of
the relationships between the target student and their family.
128 Cathy Little
Findings from the questionnaire and case studies generally suggested primary
teachers were positive in their attitude toward inclusion generally, but lacked confi-
dence in their abilities to put these beliefs into practice, reporting low self-efficacy
and limited knowledge in the area of Autism Spectrum Disorder. Higher order
decision-making processes and ‘systemic blinkering’ were elements that further
contributed to teachers’ low self-efficacy. Overwhelmingly teachers requested a
need for ongoing professional development and additional resources to support
and inform their provision of socially inclusive opportunities for students with an
Autism Spectrum Disorder.
When discussing the understandings of social inclusion by key participants, one
must refer to the definition used for the study. Social inclusion was defined as the
consideration of the student with an Autism Spectrum Disorder as an accepted
member of a group, exhibiting at least one mutual friendship and participating
actively and equally in group activities. Results from the Teacher Attitudes Survey
intimated that while teachers voiced the importance of the social well-being of
students, the in-depth analysis of case study data indicated that active engage-
ment in planning for students’ social participation and inclusion in group activities
was not apparent. In comparison, the target student participants and peer groups
reported greater awareness of the concepts of friendships and values of acceptance
than their adult contemporaries, thus intimating a greater understanding of the core
underpinnings of social inclusion.
Conclusion
Teacher attitudes are formed and shaped by affective, cognitive and behavioural
processes, framed by previous experiences and personal judgements (Segall and
Campbell, 2014). These processes influence the way in which teachers perceive
themselves and their students, and serve to guide the overt response behaviours
used within the context of the educational environment. Despite positive demon-
strations in attitude toward the inclusion of students with an Autism Spectrum
Disorder, primary teachers have limited knowledge as to how to facilitate these
students’ social inclusion. The onus lays with future research as to how to best
harness this positive affect. The onus lays with future research as to how to trans-
form teachers positive attitudes into affirmative behavioral enactment of socially
inclusive opportunities for students with an Autism Spectrum Disorder.
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10
USING TYPICALLY DEVELOPING
PEERS AS SUPPORT FOR SOCIAL
INCLUSION OF CHILDREN AND
ADOLESCENTS WITH AUTISM IN
SCHOOL SETTINGS
Jill Locke and Colleen Harker
Social impairment may be the most challenging and pervasive core deficit that
affects children and adolescents with Autism Spectrum Disorder (ASD) (Kasari
and Rotheram-Fuller, 2007). Social challenges, particularly apparent in school
settings, have a lasting impact on peer relationships of children and adolescents with
ASD (Bauminger and Kasari, 2000; Locke, Ishijima, Kasari and London, 2010). The
Individuals with Disabilities Education Act (IDEA, 2004) mandates that children
with disabilities, including ASD, be educated within the general education envi-
ronment with typically developing peers whenever appropriate. The inclusion of
children and adolescents with ASD in general education classrooms is an increas-
ingly common practice to ensure they are educated in the least restrictive learning
environment. However, placement of children and adolescents with ASD in prox-
imity with typically developing peers is necessary but not sufficient for promoting
social engagement (Odom and Strain, 1984). Rather, children and adolescents with
ASD require ongoing support, facilitation, and structure to be socially successful in
school settings (Simpson, de Boer-Ott and Smith-Myles, 2003).
Peer models
Peer-mediated interventions have shown promise in addressing this issue (e.g.,
Rogers, 2000; Chan et al., 2009). Peer-mediated interventions comprise training
same-age or older typically developing peers (e.g., classmates) on skills to engage
132 Jill Locke and Colleen Harker
children with ASD (Bellini, Peters, Benner and Hopf, 2007; Rao, Beidel and
Murray, 2008; Chan et al., 2009; Kasari, Rotheram-Fuller, Locke and Gulsrud,
2012). Peer-mediated approaches are either indirect, in that the expert facilitator
works exclusively with the peer models rather than the target students with ASD,
or concurrent, in that the expert facilitator works with both students with ASD
and their peers simultaneously. In schools, peer-mediated interventions most
frequently take place during the recess/lunch period or as a pull out service.
Schools serve as important service delivery systems for all students, particularly
students with ASD (Locke, Kratz, Reisinger and Mandell, 2014). As children and
adolescents spend a majority of their day at school, it is critical to capitalize on
possible intervention opportunities in which they can practice new skills. Peer-
mediated interventions are particularly relevant in school settings, as schools pro-
vide ample opportunities in which children and adolescents with ASD can interact
with typically developing peers within a natural context (Bellini et al., 2007). The
number of peers present within schools provides a large selection of potential inter-
vention agents, which may mitigate implementation barriers commonly faced by
teachers and other school staff (e.g., lack of time, resources) (Bellini, et al., 2007;
Chan et al., 2009; Locke et al., 2014b).
Although adult-delivered, one-on-one supports are typical in school settings,
an overreliance on these methods may hinder students from fully participating
in the social opportunities available within inclusive settings (Hemmingsson,
Borell and Gustavsson, 2003). Furthermore, social skills interventions are not
only more ecologically valid when delivered by peers than by adults but also may
be more effective (Gerber, Finn, Achilles and Boyd-Zaharias, 2001; Giangreco,
Broer and Edelman, 2001; Hemmingsson et al., 2003; Carter and Kennedy, 2006;
Kasari et al., 2012). The use of peer models may create a more inclusive climate
and culture for children and adolescents with ASD at school, thereby encourag-
ing generalization and maintenance of skills that are often not achieved when
using an adult as the interventionist (Chan et al., 2009; Kasari, Locke, Ishijima
and Kretzmann, 2013).
Peer-mediated approaches
To date, peer-mediated approaches have the largest evidence base for improving
social functioning in children and adolescents with ASD (Haring and Breen,
1992; Sainato, Goldstein and Strain, 1992; Kamps, Potucek, Lopez, Kravits and
Kemmerer, 1997; Pierce and Schreibman, 1997; Laushey and Heflin, 2000;
McConnell, 2002; Bellini et al., 2007; Kasari et al., 2012). In the f ollowing section,
we briefly review the most common peer-mediated approaches, including
peer modeling, networking, tutoring, and mentoring (Utley, Mortweet and
Greenwood, 1997; DiSalvo and Oswald, 2002; Carter and Kennedy, 2006; Zhang
and Wheeler, 2011; Bohlander, Orlich and Varley, 2012; Kasari et al., 2012). These
methods differ in the roles that peer models play (i.e., direct vs. indirect), as
Peer supports 133
well as the format (i.e., group vs. individual), and the target of the intervention
(i.e., social vs. academic).
Peer modeling involves pairing a socially competent peer model with a student
with ASD in order to demonstrate appropriate social behaviors (Utley et al., 1997;
Zhang and Wheeler, 2011; Kasari et al., 2012). In peer modeling, peers do not
provide any direct intervention; rather, they merely model behaviors (e.g., sharing,
requesting, joining in play). This approach also may include video modeling in
which students with ASD watch a video of a peer model demonstrating desired
behaviors (Nikopoulos and Keenan, 2004; Bellini and Akullian, 2007). Peer model-
ing often is used as a component of peer-mediated and other social skill interven-
tions, in which the student with ASD watches the peer model, practices the skill,
and receives feedback on his or her performance.
Conversely, peer networking combines adult- and peer-mediated strategies
to create a broad support system in the classroom for students with ASD (Utley
et al., 1997; Garrison-Harrell, Kamps and Kravits, 1997; Zhang and Wheeler, 2011;
Kamps et al., 2014). In peer networking interventions, peers both initiate social
interactions with students with ASD and model appropriate behaviors. Peer net-
works often are informal and typically include a small group of peer models that
are instructed to integrate target students with ASD into appropriate peer groups
within classroom, cafeteria, and playground settings (Utley et al., 1997; Kasari et al.,
2012; Kamps et al., 2014).
Peer tutoring or peer mentoring is another peer-mediated approach that
involves pairing peer models with target students with ASD to promote curricular
and social interaction skills through structured, dyadic, one-to-one instructional
interactions (Utley et al., 1997; Rogers, 2000; DiSalvo and Oswald, 2002). Peer
tutors and mentors often are taught specific strategies on redirecting, engaging, and
scaffolding behaviors for target students with ASD (Bohlander, Orlich and Varley,
2012; Kasari et al., 2012). Peer tutoring and peer mentoring create opportunities
for students with ASD to interact with socially competent peer models to learn
academic tasks as well as social-communication skills (DiSalvo and Oswald, 2002;
Bohlander, Orlich and Varley, 2012).
Peer-mediated intervention strategies and formats vary depending on the
intended outcome. Many school-based peer-mediated interventions strive to pro-
vide opportunities for social interactions between children and adolescents with
ASD and their peers. Peer models are taught a specific set of skills through direct
instruction, prompting, modeling, role playing, and reinforcement that entail: iden-
tifying isolated students, initiating and responding to social interactions, organiz-
ing play activities, redirecting and ignoring inappropriate behaviors, monitoring
behavior requests, sustaining engagement in games, mediating conflict, and serving
as tutors for schoolwork and recreational activities (Odom and Strain, 1986; Kamps
et al., 1992; Morrison, Kamps, Garcia, and Parker, 2001; Kamps et al., 2002; Orsmond,
Krauss and Seltzer, 2004; Kasari et al., 2012; Locke et al., 2014b). Adult facilitators
typically cue peer models to use the strategies with students with ASD (Rogers,
134 Jill Locke and Colleen Harker
2000; Koegel, Werner, Vismara and Koegel, 2005; Bauminger et al., 2008; Harper,
Symon and Frea, 2008; Licciardello, Harchik, and Luiselli, 2008). Often, peer mod-
els are given homework assignments or “missions” to practice learned skills with
students with ASD (Kasari et al., 2012; Reichow and Volkmar, 2010).
The majority of research investigating social interventions for individuals with
ASD has focused on preschool and elementary school–aged children (Reichow and
Volkmar, 2010). There is a dearth of research about social skills interventions, par-
ticularly peer-mediated interventions, for students with ASD in secondary school
(Reichow and Volkmar, 2010). To date, peer-mediated intervention strategies for
students with ASD in middle and high school have mirrored those of elementary
school, though the content and context have differed (Carter and Hughes, 2005).
This continues to be an area that warrants further research.
Because teachers are rarely present during recess, they tend to select children as peer
models based on classroom characteristics and behaviors. Typically, selected peers
are obedient, self-confident leaders in the classroom who are considered socially
competent, prosocial, popular, and already have some interest and connection to
children with ASD, and willingness to participate in the intervention (Jackson and
Campbell, 2009; Locke, Rotheram-Fuller and Kasari, 2012; Kamps et al., 2014).
It is thought that children comprising these qualities may be more empathetic
or understanding of children with ASD and more willing to socially engage with
them as compared to non-peer models (Locke et al., 2012). There also is anecdotal
evidence that suggests that elementary-aged girls may be more likely than boys to
take on a “care-taking role,” and be more nurturing and responsive when acting as
peer models for children with ASD (Center and Curry, 1993; Chamberlain et al.,
2007; Owen-DeSchryver et al., 2008).
Garrison-Harrell and colleagues (1997) operationalized the selection of peer
models in their study of a peer network intervention for children with ASD by
using children’s social network status, or social positioning within their classroom.
Students completed a formal peer rating system and listed their friendship nomi-
nations (who they prefer to hang out with), which teachers then reviewed for peer
model selection to determine which students might be appropriate peer mod-
els. Despite consistencies in the factors used by teachers and researchers to select
peer models across studies, these characteristics have yet to be empirically tested to
determine which qualities encompass the ideal peer model.
Social demands dramatically change between elementary and secondary school;
therefore the criteria used to select elementary school–aged peers may not be
appropriate for selecting adolescent peer models. Peer relationships undergo signif-
icant change during adolescence as the nature of friendship shifts from gameplay
to deeper relationships that focus on commitment, closeness, security, intimacy,
and acceptance (Buhrmester, 1990; Berndt and Savin-Williams, 1993; Shulman,
Laursen, Kalman and Karpovsky, 1997). Peer relationships become more complex
and interactions more nuanced, making it difficult for adolescents with ASD to
navigate this new social landscape (Adreon and Stella, 2001; Locke et al., 2010). To
compound this issue, typically developing adolescents may be more aware of stu-
dents who may have a disability and less malleable in changing their attitudes and
behaviors towards adolescents with ASD (Humphrey and Lewis, 2008). As a result,
fewer established guidelines exist for selecting suitable peer models for adolescents
with ASD compared to those for elementary school–aged children.
There also are additional logistical factors to consider when implementing
peer-mediated interventions in middle and high school settings as compared to
elementary school, which may influence how peer models are selected to partic-
ipate. For example, in middle and high school, students have different schedules
and switch classes as often as six or more times a day; therefore, there is limited
consistency in the composition of the peer group throughout the day. Additionally,
there are fewer opportunities for unstructured social interaction in middle and
high school, as classes involve more independent work (Carter and Kennedy, 2006).
136 Jill Locke and Colleen Harker
School supports
Schools planning to implement peer-mediated interventions for students with ASD
should take into account a number of considerations, including group composition
(i.e., number of peer models), intervention method (e.g., peer networks, peer tutor-
ing), oversight (i.e., teacher support), context (i.e., where the intervention will take
place), intervention goal (i.e., social or academic), and training needs (e.g., time, staff
support, curricula) to ensure the success of the program. Furthermore, in addition
to didactic social skills instruction, it is important that schools provide opportunities
for peer models and students with ASD to interact in and out of the classroom. Of
particular interest is determining the number of peer models needed to prevent
peer burnout while also averting stigmatization for students with ASD. This ques-
tion has yet to be empirically tested, and the results may be different depending on
the age of the peers and the functioning level of the student with ASD.
138 Jill Locke and Colleen Harker
Future directions
Despite the promise of peer-mediated interventions, several important questions
remain unanswered that warrant future research. These areas are of critical impor-
tance to understand for replication studies as well as widespread implementation in
schools. First, though many studies report the fidelity of the expert adult facilitator
working with the peer models, the implementation fidelity (e.g., adherence, quality
of delivery, exposure) of the peer models is notably absent from the literature, save
for a few studies.This issue may be due to the fact that few peer-mediated interven-
tions have manuals with strict fidelity guidelines and many approaches share over-
lapping strategies (e.g., peer modeling, peer tutoring, peer mentoring, etc.). Thus, it
may be difficult to parse out specific steps of one particular peer-mediated inter-
vention approach to measure implementation fidelity. Furthermore, the intended
treatment goal of the intervention (i.e., academic or social skills) may determine
whether it is possible to measure implementation fidelity, as social skills may require
more flexible settings (e.g. on the playground or cafeteria) where strict fidelity may
be difficult to capture. Future studies also should examine the generalization of
skills to other students, beyond peer models (Hughes et al., 2012).
Additionally, there is a need to further examine the social characteristics of typ-
ically developing students who make the most effective peer models for children
and adolescents with ASD. Understanding the social profiles of peer models may
help determine under what conditions peer-mediated interventions should be
implemented. Moreover, rather than relying exclusively on teacher nominations,
peer models should be selected based on the social networks of students within
the classroom, to identify peers who are already socially connected to the student
with ASD. It also has been suggested that students with ASD should be involved in
selecting peer models, which may increase their buy-in in the intervention (Carter
and Kennedy, 2006). To date, these issues have not been systematically studied.
Research in this area has the potential to benefit the large and growing number of
children with ASD in inclusive school settings.
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11
THE ROLE OF FAMILIES IN
SUPPORTING SOCIAL INCLUSION
Iva Strnadová
Introduction
The importance of social inclusion is demonstrated by a number of leading
international documents, such as the UN Convention on the Rights of the Child
(United Nations, 1989). Article 23 clearly states that “. . . a mentally or physi-
cally disabled child should enjoy a full and decent life, in conditions which ensure
dignity, promote self-reliance and facilitate the child’s active participation in the
community”.
Families of children and young people play a crucial role in their offspring’s
social inclusion (Burford, 2010). This is especially true for families of young people
with Autism Spectrum Disorder (ASD). For example, parents were instrumental in
calling for educational and social provision for their children with Autism, as well as
advocating for acceptance of Autism as “a different way of thinking and behaving,
which should be accepted and respected”, rather than being perceived as a disorder
(Langan, 2011, p. 200).
Families of children with ASD have been in the center of research interest for
decades, with a focus on the stress experienced by these families (for a review of
research on parenting stress in families of children with Autism please see Hayes and
Watson, 2013), coping over time (Gray, 2006), impact on siblings (Macks and Reeve,
2007) and grandparents’ experiences (Margetts, Le Couteur and Croom, 2006;
Miller, Buys and Woodbridge, 2012). The research findings suggest that positive
parenting practices influence socio-emotional and cognitive-linguistic outcomes of
children with Autism (Siller and Sigman, 2008; Smith and Anderson, 2014).
In this chapter the role of the family in supporting the social inclusion of their
child with ASD will be examined, with a particular focus on self-determination,
self-advocacy, social skills development, and home–school collaboration. Two
case studies will be presented to demonstrate how families and schools can work
The role of families in supporting social inclusion 145
Rausch, 2002), and especially of children with ASD (Chamberlain et al., 2007).
These themes are also areas in which family involvement is crucial. It is families
who teach their children social skills, especially the skills essential for developing and
maintaining friendships. It is also families who monitor their child’s acceptance by
peers, and often raise concerns in this area with their child’s school (Chamberlain
et al., 2007).
Fostering self-determination
There are a number of ways in which parents can support social inclusion of
their children. First and foremost, it is essential to focus on developing the self-
determination of their children with ASD. Self-determination is defined as
“acting as the primary causal agent in one’s life and making choices and deci-
sions regarding one’s quality of life free from undue influence or interference”
(Wehmeyer, 1996, p. 24). Self-determination encompasses a number of skills,
such as choice-making, decision-making, problem-solving, self-awareness, self-
advocacy, and self-efficacy. There is a body of evidence proving the link between
a level of students’ self-determination and their positive outcomes in adult-
hood (Zhang, Wehmeyer, and Chen, 2005). Therefore promoting students’ self-
determination is viewed as an essential part of education nowadays, especially
when it comes to students with disabilities. It is also acknowledged that not
only teachers, but also parents play a pivotal role in fostering their child’s self-
determination, with parents understanding the importance of self-determina-
tion (Carter, Lane, Cooney, Weir, Moss and Machalicek, 2013). As highlighted by
Carter et al. (2013), parents are in a distinctive position to observe their child’s
self-determination skills across a variety of settings, such as their home, the
community, and other non-school environments. There are a number of ways
in which parents can develop and nurture the self-determination of their child
with ASD, such as providing opportunities to make decisions (e.g., about which
extracurricular activity they wish to be involved in), and helping them to make
connections between their goals and their actions.
An important aspect of self-determination is developing children’s knowledge
of their own disability and how it may portray to other people in their envi-
ronments (e.g., their literal responses might be viewed as arrogance). Obtaining a
solid understanding of one’s strengths as well as a disability’s symptoms allows for
identifying appropriate strategies to develop social skills to address these. Yet, it is
surprising that some students with ASD, while receiving support at their school, are
not aware of having a disability. For example in Danker, Strnadová and Cumming’s
(unpublished data) study on student well-being of high school students with ASD,
it became apparent that a number of high school students with ASD recruited for
the study were not aware of having ASD, therefore their parents and teachers asked
the researchers not to reveal this information to these students. This is alarming, as
not having knowledge of one’s disability does not allow for sufficient development
of self-determination and self-advocacy.
The role of families in supporting social inclusion 147
In supporting their child’s social inclusion, families sometimes need the support
and guidance of professionals, especially when it comes to supporting their child in
areas such as behaviour management and social skills development (Derguy, Michel,
M’Bailara, Roux and Bouvard, 2015; Papageorgiou and Kalyva, 2010). In their
review of parent education programs available for parents for children with ASD,
Schultz, Schmidt and Stichter (2011) identified that most of these programs focus
on behavioural and communication techniques, with most of these targeting parents
of children aged up to 5 years of age. Some of these programs were designed for
both children with high-functioning ASD and their parents (Weiss, Viecili, Sloman
and Lunsky, 2013).There is clearly a need for such programs to also target parents of
teenagers and young adults with ASD.
CASE STUDY 1
classmates. When they raised this issue with Mrs. Clamsy, Rosie’s classroom
teacher, she indicated that Rosie was also alone during breaks. As she spent
most of this time reading her favourite books, and given she was not being
bullied, Mrs. Clamsy did not see any issue with the situation. Rosie’s par
ents however disagreed, and raised their concerns about Rosie not having
friends, as well as their frustrations with Rosie’s lack of inclusion. Mrs. Clamsy
and Rosie’s parents agreed that this issue should be discussed at Rosie’s next
Individualised Educational Plan (IEP) meeting. Prior to the meeting, Rosie pre
pared a PowerPoint presentation, highlighting her thoughts on the issue. She
expressed that she feels lonely at school, and wished to have friends she could
spend time with. She however did not feel comfortable about some expres-
sions of friendship that she observed in her classrooms, such as girls greeting
each other with a hug, or sharing lunch by biting into each other’s sand-
wiches, which Rosie found highly unhygienic.
At the IEP meeting, Rosie, her parents, Mrs. Clamsy, and Rosie’s speech thera
pist discussed ways in which Rosie could be more socially included. Given her
struggles with small talk, her speech therapist prepared a set of social scripts,
which were to be practiced both at her speech therapy sessions and at home
with her parents. Mrs. Clamsy suggested that Rosie could participate in a new
extracurricular activity introduced in the school, a biology club, which would
allow her to meet peers with similar interests. Rosie was very excited about this
proposition, however also a bit concerned about how she would be accepted
in the biology club. She asked Mrs. Clamsy about students attending. Rosie’s
mother realised, when hearing the students’ names, that she knew the mother
of one of these students well, and decided to talk to her to encourage her
daughter’s acceptance and involvement with Rosie.
Mrs. Clamsy also promised to utilise group work in classes as well as peer
tutoring to encourage other students to engage with Rosie. Rosie’s speech
therapist recommended that Rosie use the QuickCues™ mobile app at home.
She explained to Rosie and her parents that this was a social script application
designed to support teenagers with Autism in learning the social skills related
to communication and life skills. She also suggested the Social Skills Builder™
app, which consisted of real life situations in different settings, including high
school and the community.
Following the IEP meeting, Rosie practised the initial interactions she might
have at the biology club at home as well as at the sessions with her speech
therapist. Her mother also met with the mother of Amy, a girl who attended
the biology club. They arranged a weekend visit at Rosie’s place to intro-
duce the girls. Later on Amy introduced Rosie to the biology club, and as she
was well-liked among her peers, Rosie became actively involved in this new
social network. Rosie also tried both apps suggested by her speech therapist.
(continued)
150 Iva Strnadová
Later on she was introduced to the FriendMaker™ app, which she found
particularly useful in understanding some of the hidden rules of social inter-
actions, as well as in learning skills such as entering into conversations and
scheduling get-togethers. Mrs. Clamsy invited a speaker from the Autism Self-
advocacy Group. Mrs. Golden was a specialist in computer programming, and
spoke about her experiences growing up, challenges she faced, and the ways
she overcame these. Students were allowed to ask questions, and this pre-
sentation was followed by a class discussion about diversity and peer accep-
tance. Over a period of 6 months, Rosie’s position in her classroom improved,
she had regular interactions with her classmates during breaks, and she was
invited to their birthday parties. Furthermore she developed a friendship with
Amy and two boys in the biology club.
CASE STUDY 2
friends in his class using the KeyNote™ app. From his perspective, Jane was
a friend he liked to play with. When this was presented at Peter’s IEP meet-
ing, a discussion followed about what a friendship looks like and what friends
do to be recognised as friends. Mr. Grant and Peter’s occupational therapist
prepared a visual social story to accompany this conversation. Mr. Grant also
mentioned that Jane sometimes found it difficult to play with Peter, as he
does not take turns in games, and he often does not want to change to a dif-
ferent game when Jane gets bored with the one they are playing. Everybody
agreed to focus on turn taking as the next step in strengthening Peter’s friend-
ship with Jane. Mr. Grant suggested using the Power Card Strategy (Daubert,
Hornstein and Tincani, 2015), a visual aid–based intervention, which would
be very suitable, given it would allow the use of Ninja Turtles, a great interest
of Peter’s. A Ninja Turtles motif was printed on Peter’s cards, and the targeted
behavior was taking turns. Peter also practiced turn-taking at home, with his
mother, grandparents and younger sister.
Following an intervention, Peter learned to communicate his needs in a
more appropriate way, and the occurrence of his aggressive and self-injurious
behaviours decreased. He enjoyed using the Ninja Turtle cards, and gradu-
ally learned to take turns during a game on most occasions. This resulted in
numerous occasions when not only Jane, but also other classmates played
with him. Peter’s mother also noted improvement in the relationship between
Peter and his sister.
Future directions
Families of children and young people with ASD play a pivotal role in supporting
their child’s social inclusion. Their involvement in the development of the social
skills of their child, as well as in fostering his/her self-determination, is critical for
their child’s future outcomes. While this has been acknowledged by a number of
researchers, it would be unfair to expect families to bear the main responsibility for
their child’s inclusion. As highlighted by Bossaert (2013), there are four main aspects
of social inclusion, with two of them placing expectations of active involvement on
the child with a disability (reciprocal relationships and interactions), while the other
two place expectations on the child’s environment (perception of the student with
ASD and acceptance by classmates). In other words, social inclusion can be achieved
by the active involvement of all relevant stakeholders, i.e., of a child with ASD, his/
her family, teachers, classmates and their families. Home–school collaboration is a
cornerstone of these efforts.
The importance of one’s self-determination skills for successful social inclusion
cannot be underestimated. While there are documented efforts of the fostering
of these skills in the school environment, families need a raised awareness of the
importance of the development of self-determination skills across all environments
152 Iva Strnadová
including the home. Teachers can suggest useful ways that parents can support the
development of their child’s self-determination skills. It is particularly important
that parents discuss what it means to have Autism, some characteristics related to
Autism that the child has, and ways to make the best use of these.
Teaching social skills and role-playing the acquired skills is another important
area where parents can be of significant help. In order to do this effectively, more
educational programs in this area are needed. It is essential that these programs
can be accessed in diverse modes (such as evening classes, a weekend program, or
online), given the limited availability of many parents. Furthermore, more research
needs to focus on the social skills development of children with low-functioning
Autism (particularly those with ASD and severe intellectual disability).
Summary
This chapter explored the ways that families can support the social inclusion
of their children with ASD. Particular focus was given to development of self-
determination, self-awareness, self-advocacy, and social skills. The importance of
home–school collaboration was also highlighted. The case studies of Rosie and
Peter illustrated some strategies used by families to support the social inclusion of
their children with high- and low-functioning Autism. The author also provided
suggestions of how families of children with Autism Spectrum Disorder can be
supported in the process of social inclusion of their children.
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12
INFLUENCE OF CULTURE ON
SOCIAL INCLUSION OF CHILDREN
WITH AUTISM
Kanokporn Vibulpatanavong
Culture influences how we perceive ourselves and others (West and Turner,
2011). Thus, it also influences how we interact with and relate to others in the
society. For example, each culture interprets disability differently (Ukpokodu and
Ukpokodu, 2012). How people with disabilities perceive themselves, how they are
perceived by others, and the roles that they take on or are given within a society
varies from culture to culture. According to Groce (1999), social acceptance and
resources for support of people with disabilities are influenced by three categories
of cultural beliefs: explanations of why a disability occurs (e.g., a result of God’s
punishment, or an evidence of God’s trust in the parents to take care of the child),
human attributes the society finds important (e.g., if intellectual strength is more
valued in the society than physical strength, physical disability may be less limiting),
and anticipated roles in the future of people with disability (e.g., whether to grow
up to be independent, or to depend on others) (Groce, 1999).
According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth
Edition (DSM-V) (American Psychiatric Association, 2013), persons with Autism
Spectrum Disorder are persons with (1) difficulties in social communication and
social interaction, and (2) restricted, repetitive patterns of behavior, interests, or
activities. While restricted patterns of behaviors and interests can intensify social
communication and social interaction difficulties for people with Autism (Moldin
and Rubenstein, 2006), social communication and social interaction difficulties can
also intensify restricted patterns of behaviors and interest in people with Autism
(White and Schry, 2011).
Autism occurs in all cultures (Baron-Cohen and Bolton, 1993). However, cul-
tural beliefs and practices of a social group can add complexities to promoting
social inclusion of children with Autism within that group. Cultures influence how
family interpret and cope with Autism ( Jegatheesan, Miller and Fowler, 2010), how
parents choose treatments for their child (Ennis-Cole, Durodoye and Harris, 2013),
how practitioners diagnose Autism (Kang-Yi, Grinker and Mandell, 2013), and
how people in the communities perceive individuals with Autism and their families
(Kwang Hwang and Charnley, 2010).Adding to the complexities is the difficulties of
children with Autism to learn and understand certain aspects of the culture. As cul-
ture is learned through socialization, difficulties in social communication and social
interaction can reduce the opportunities of children with Autism to participate in
social situations. Even when children with Autism participate in social situations,
they may not interpret the situations correctly due to difficulties in understand-
ing other people’s point of views and non-verbal communications. While children
with Autism do not display behaviors according to the cultural expectations, the
opportunities for them to be socially included in the community are even more
reduced. To further complicate the picture, several countries are becoming more
multicultural (Geisinger, 2003). Children with Autism and their families may not
be from the dominant culture of the society, and thus they may have to cope with
additional issues, such as whether a child with Autism should learn the dominant
language only, or also learn his or her parents’ native languages ( Jegatheesan, 2011).
Therefore, teachers and professionals need to understand the additional issues that
Influence of culture on social inclusion of children with Autism 157
children with Autism and their families might face ( Jegatheesan, 2011), and attempt
to promote social inclusion of children with Autism in a way that is respectful to
their cultural identities.
Thailand is a country in the Southeast Asia region with a population of over
60 million people. It borders Laos to the Northeast, Burma to the Northwest and
West, Cambodia to the Southeast, and Malaysia to the South. The official language
of the country is Thai. Ninety-four point six per cent of the population practice
Buddhism, 4.6 per cent Islam, 0.7 per cent Christianity, and 0.1 per cent other
religions or have no religion (National Statistical Office, 2011). The number of
children with Autism in Thailand is not clearly known, however in a review of the
prevalence rate of Autism in several countries worldwide by Kopetz and Endowed
(2012), 180,000 children in Thailand were diagnosed with Autism.
This chapter discusses cultural influences on the social inclusion of children
with Autism. It uses Thailand and Thai culture as a case example; however, studies of
other countries are also included for further explanation and for comparison.Three
central aspects of culture relevant to the inclusion of children with Autism are
discussed: (1) religious and local cultural views of Autism, (2) language issues con-
cerning Autism, and (3) cultural perceptions of social skills of children with Autism.
In writing this chapter, an interview was conducted with ten Thai parents whose
children with Autism are receiving support in a provincial special education center
in Thailand, and with regular teachers and special education teachers in two public
schools in the same province. A Buddhist monk, who taught Dharma to a regular
school in Bangkok, was also interviewed for specific understanding of Buddhism in
relation to the social inclusion of children with Autism.
in the community” ( Jegatheesan et al., 2010, p. 98). Findings from studies by Tait
and Mundia (2012) on Bruneian families, and Hersinta Suroso (2012) on Indonesian
families, found Muslim families tended to interpret Autism positively. However,
some families felt that their faith was challenged, and that without explanations,
their neighbors may not understand about Autism. Nevertheless, Tait and Mundia
(2012) explained that attributing Autism to external causes, such as a divine bless-
ing or a divine test, resulted in higher acceptance of children with Autism and less
self-blame in parents.
In a Jewish ultraorthodox community in Israel, Shaked and Bilu (2006) found
that mothers of children with Autism believed that their children were of higher
spiritual status.They believed that their child was not capable of intentionally com-
mitting sin so their child would remain pure in this life, or that their child was less
spiritually restricted and was more capable of seeing the divide presence, or that
their child was a reincarnation of a righteous person who had been born to correct
one small flaw committed in the previous life. However, some of the mothers also
expressions concern over their children’s behaviors, and believed that they had to
overcome sufferings in life for spiritual growth.
These studies show us that in different theist religions, there are parents who are
able use their religion as a framework for interpreting Autism positively in ways that
are helpful to them in coping with challenges, supportive to the development of
their children, and subsequently beneficial to the social inclusion of their children.
If parents are able to do so, there is a good chance that people in the communities,
with the support of religious organizations and professionals working with children
with Autism, are also able to interpret Autism in a positive light and make the com-
munity more inclusive for children with Autism.
In Buddhism, however, there is no god. Situations in life are explained through
the law of conditionality, also referred as the law of dependent condition (Ratanakul,
1999). Based on the law, all things in life are interdependent as causes and effects.
Included in the law of conditionality is the law of karma, a subtle law in which
actions lead to consequences. Buddhist people in Thailand often attribute disability
to “karma” (Proyer, 2014), the past deeds of the child with disability or of their
families in the past or the present life.
In an interview with a group of parents, a father of a child with Autism shared, “I
believe it was karma, because in my side of the family, there is no history of Autism.
Also, there is no history in my wife’s family.” A mother of a child with Autism
explained the delay in the diagnosis as,“Why do I found out when she was nine? . . .
Why didn’t they tell me? Until she was nine, several people told me to go see a
doctor. I think it’s about karma. Really, I had just found out, it took me 8–9 years.”
As a result of her belief in karma, the mother committed to Buddhism practices
such as praying and meditation:
I pray and mediate, and make wishes . . . I pray every day for my daughter, for
my family, my husband, for her to have better development, for her to be in
the community, to get along with other children, and teachers, I feel that she
Influence of culture on social inclusion of children with Autism 159
Ratanakul (1999, p. 20) explains that karma in Buddhism “does not lead to fatal-
ism, nor to pessimism”. It does not entail “complete determinism” (Ratanakul,
1999, p. 20). In the interview with a Buddhist monk for this book chapter, he
elaborated:
Kam (Karma) mean actions. It’s about causes and effects. Whatever one does,
the person will receive the consequences. . . . As you sow, and so shall you
reap. But that does not mean that one should be discouraged. If you think
like this, it’s finished, no more courage. . . . There is a saying that there is a jar
half filled with water. There is a spoon of salt mixing with the water, and you
cannot separate them. Water is compared to good deeds. Salt is compared to
bad deeds. . . . If we add more salt, the water will be so salty that it cannot be
drunk. But if you add more water, the salt will be diluted and you may not
taste the salt anymore. We may have committed bad deeds but if we do more
and more good deeds, the bad deeds cannot affect us, just like that we cannot
taste the saltiness of the water.
The Buddhist monk also further stressed that it is important for persons with
disability to further develop through practice.
In Buddhism, we talk about working with what we have, the best persons are
not the persons who own the best things, but are persons who make the best
of what they have. We must further develop ourselves. There is a Buddhist
saying . . . humans are noble through practice. . . . People with disabilities need
to think that they can develop themselves, in our own ways, not the same
ways as other people. . . . We add on, develop from what we have.
Some Buddhist parents rely on the principles of karma in explaining the occur-
rence of Autism and other related challenges in their lives (e.g., the delay in the
diagnosis). The religious belief gives parents some answers and helps them reach a
level of acceptance so they can move forward. Similar to the studies on the theist
religions discussed above, the principles of karma can be interpreted positively.
Although it is possible there are parents who may develop a deterministic attitude
(i.e., feeling helpless, believing there is nothing they can do to change the situation),
these parents can be supported by professionals and Buddhist monks to reinterpret
karma in the way that allows them to promote the development of their child with
Autism.
Community members’ perceptions of children with Autism can also be influ-
enced by the belief in karma. According to Kilbort-Crocker (2012) the belief in
160 Kanokporn Vibulpatanavong
karma can both “encourage the social inclusion of people with disabilities” or “serve
to isolate them” (p. 20). Some people may see disability as the fault of the person,
because they [the person] accumulated bad merit in their past life. As a result, there
may be “a lack of initiative by the community to provide services to improve qual-
ity of life and opportunities, and an overall lack of compassion” (Kilbort-Crocker,
2012, p. 20). However, the principles of virtuous existence, called Brahmavihara, are
often emphasized in the lives of Buddhist people in Thailand. The four principles
include “metta” (ability to be kind or to share happiness with others), “karuna”
(ability to share in others’ sufferings and also act in order to help), “mudita” (the
ability to rejoice in the happiness of others), and “upekka” (equanimity towards
both good and bad situations in life) (Naemiratch and Manderson, 2009). Through
practicing Brahmavihara, Buddhist people believe that they can accumulate good
merits, which, according to the law of karma, will positively enhance their lives.
Brahmavihara underpins the Thai social values of giving and helping other people
(Naemiratch and Manderson, 2009) and promotes the social participation of per-
sons with a disability.
In interviewing a group of teachers from a Buddhist-based school, the teachers
were asked what they thought about educating children with Autism in regular
settings. One teacher said, “One must have ‘metta’. This is the core. It must be their
past karma. If we don’t help, who will?” Another teacher added:
The Buddhism beliefs in Thailand can be interpreted in the way that promotes
acceptance of children with Autism into regular settings and encourages regular
children to try to understand their peers with Autism. In the Buddhist-based school
noted above, students are taught to have compassion for and to help other students.
Buddhist practices, such as listening to Dharma, making food offerings to Buddhist
monks, and participating in meditation sessions, both in school and at temples, gives
children with Autism opportunities to be a part of the community.
In addition to the religious beliefs, in Thailand there is a prevailing social per-
ception of ‘songsarn’ toward persons with disabilities (Naemiratch and Manderson,
2009). Depending on the context, songsarn can mean empathy, compassion, or pity
(Kilbort-Crocker, 2012). Thai people often feel ‘songsarn’ when other people are
in difficult situations, or are less fortunate than themselves. At another school in the
same province, when teachers were asked how they help children accept children
with Autism, a teacher said, “Mostly, the school director will do it at the beginning
Influence of culture on social inclusion of children with Autism 161
of the semester. Class teachers also ‘melt together’ the children in their classrooms,
telling regular kids that they are ‘nasongsarn’, we have to take care of them, help
them, and forgive them.” A special education teacher at the center also stated that:
When we talk about Pikarn (disability), there is always the word ‘songsarn’.
It creates misunderstanding to Thai people. When I talk about working at a
special education center, a center for children with disability, people come
in here thinking it is depressing, it is ‘nasongsarn’. I work here thinking it
is my profession. It is my job. I develop potentials. For me, ‘songsarn’ gives
depressing feelings.
Conclusion
Culture is a way of living, and thus encompasses all areas of lives. In this chapter,
three main aspects of cultures are discussed: religious and local perceptions of
Autism, language, and socially acceptable behaviors. Culture influences social
perceptions and social acceptance of children with Autism. Individuals with
Autism and their families from different cultures face different challenges.
Influence of culture on social inclusion of children with Autism 165
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13
SOCIAL INCLUSION: A PERSONAL
REFLECTION
Stephen Shore
From the viewpoint of a person on the Autism spectrum this chapter explores
reframing curricular and instructional modifications to have a greater focus on mean-
ingful social inclusion. By employing the nine categories of academic adjustments
outlined in the work of Cole, Horvath, Deschenes, Ebeling, and Sprague in 2000, the
author makes suggestions on how these modifications can be customized to meet the
diverse needs of students with Autism and other conditions while embedding into the
routine of the class session benefitting all students and p romoting meaningful inclusion.
Introduction
Social inclusion is all encompassing. Inclusion in the academic, employment,
community, and other domains all have something in common, and that is
communication – which is socialization. Unless one is by themselves and not
interacting with others, be it face-to-face, electronic, or by other means, one is
communicating and thus engaged in social interaction.
As the emphasis in this book is on education, focus will be on reframing
academic curriculum modifications as promoting successful and meaningful social
interaction as an integral part of teaching subject material in school with the goal of
generalizing to life after graduation. Rather than occurring in a specific place, social
inclusion is a mindset that can be applied both by individuals striving to integrate
people with Autism into the fabric of life and by persons on the Autism spectrum
seeking satisfying, deeper involvement with all others.
Preschool
With speech beginning to return at age four, I was admitted to the school where
their diagnosing professionals initially recommended institutionalization. Upon
re-evaluation, based on the work my parents had done, I was upgraded from a diag-
nosis that included strong autistic tendencies, atypical development, and psychotic
to neurotic. Things were looking up.
The center I attended subscribed to then-current psychologically oriented
beliefs of Autism being caused by poor parenting. In contrast to today, teachers were
prohibited from sharing the day’s events with the parents of the child.The rationale
was that parental queries such as whether their child ate lunch that day was framed
as a parent really wondering if the school was a better caretaker of the child than the
parent was (Shore, 2003). At that time, it was thought that such weighty questions
could only be addressed by highly trained psychologists.
Fortunately, even in that climate, I was lucky enough to have a teacher who
understood the importance of play in initiating social contact with others. For
example, realizing that the children in her class expressed interest in trains, she would
170 Stephen Shore
begin with us playing individually in close proximity. Gradually, she would add
sections of tracks to our stations until they were all connected and we would visit
the stations of our classmates. Even though this activity occurred in the late 1960s
it appears my teacher understood the importance of developing social interaction
through areas of common interest. After a year at this children’s center for “atypi-
cally developing” children, I started regular school kindergarten at age 6.
1. Size
2. Time
3. Level of Support
A personal reflection 171
4. Input
5. Difficulty
6. Output
7. Participation
8. Alternate Activity
9. Substitute Curriculum
Then after achieving success the other half could be addressed. Implementing this
strategy on a class-wide level would have the additional benefit of being more
socially inclusive.
Time
Adapt the time allotted and allowed for learning, task completion, or testing (or
assist with management of time).
A common response to the modification of time is to provide a longer period
of time for completing a project, study, or otherwise demonstrating mastery of the
subject. Although this strategy often works, the challenge facing the person with
Autism may have less to do with the actual time required to complete the task and
more to do with the management of that time. For example, many students may have
difficulty properly scheduling their time to complete a long-term project such as
a grade school science paper requiring the steps of determining a topic statement,
conducting research, and developing an outline, followed by rough and final drafts.
Suppose this year “Edward”, a student with Autism, is included in your class.
Although he engages in class discussion well, one of his accommodations is to pro-
vide an advanced organizer for all class sessions and for any long-term assignments.
Being truly interested in helping Edward, and perhaps some other students in your
course, you wonder if there’s a way to rework your instruction to accommodate
Edward as part of the general instruction to the class.
Initially, it may be tempting to take Edward aside during a break or lunch to
chart out a timeline with intermediary deadlines for each of the components
of the assignment. While this may help the student with executive functioning
needs there are often other students in a class facing similar challenges – possibly
to a lesser degree. Therefore, including the development of a timeline during the
introduction of the assignment with the entire class will benefit everyone and
Edward no longer needs to be pulled aside and treated differently than everyone
else. That said, there are times it is very fair to treat students differently, which will
be addressed at a later time.
Taking this concept a step further, perhaps there’s a student needing more sup-
port than just talking about and drawing out a timeline. A bulletin board could be
set up with columns representing the stages of the assignment (see Figure 13.1). As
each stage is approved the work gets posted to the board as a visual reminder for
everyone of their progress in completing this long-term project.
Students like seeing their work on the board. Principals like seeing student work
displayed as they make their room inspections. And parents like seeing their chil-
dren’s work hanging on the wall.
Should it be the case that Edward needs additional support in grasping the
concept of intermediary deadlines, putting him in charge of pinning the student
work on the board as the “bulletin board monitor” is a strategy that could be
used. If Edward is still challenged with the concept of time management maybe
A personal reflection 173
a classmate can be chosen to work with Edward to make sure he gets the work
pinned to the correct column. Edward’s support needs, up to hand over hand
guidance, will be provided. By initially providing more support to the entire
class followed by integrating Edward as a full participant in related class activities,
Edward’s needs are met and the preparation for his education benefits the rest of
the class as well.
In undergraduate school I enrolled in the honors section of Physics of Music.
While the course title and description sounded fascinating to me the course, unfor-
tunately, was taught in a very dry and boring manner. The honors component was
essentially a term paper on a topic of our choosing. I chose the trombone, which
has many interesting physical properties in the production of its sound. However
once the professor approved the topic statement, we were left to our own to turn
in a completed paper at the end of the semester. The executive functioning chal-
lenges proved to be too great and I ended up dropping the honors section. Had the
professor provided more guidance on intermediary steps for completing the paper
maybe I would have been successful.
Level of support
Increase the amount of personal assistance with a specific learner.
Due to the number of students in a class, educators face significant challenges in
providing sufficient support for all of their students’ needs, even when there are one
174 Stephen Shore
or more paraprofessionals in the room. Engaging other classmates for peer tutoring
and working in teams that include students with Autism can be helpful. At the very
least the other students learn how to work with an individual on the Autism spec-
trum and possibly become friends.
However, working in groups can be particularly challenging for students with
Autism due to the load of having to process multiple conversations and social inter-
actions at once. Preparing the student with Autism with clear explanations of their
role in the group based on their ability can be of great help. In fact clear explanation
of all the roles for group work will be helpful for the entire class.
I found group work particularly difficult in grade school as it was hard for
me to negotiate my role with my classmates and determine what I needed to do
and how to get it done, all while socially integrating with three or four or more
group members. Greater clarity from the instructor would have been a very useful
support.
Input
Adapt the way instruction is delivered to the learner.
Whereas most individuals on the Autism spectrum are visually based (including
me!) the key word is most! Like with the rest of the population, learning styles differ
between people with Autism. The learning style of a person on the Autism spec-
trum will be to an extreme. So extreme, that unlike the general population who
can still achieve sufficient functionality with the weaker learning modalities, the
person on the Autism spectrum may have access to only a single modality at a very
high level at the expense of the others. Visual aides, concrete examples, hands-on
activities, and learning content put to rhythm and/or melody can all be helpful for
diverse learners.
This makes it incumbent upon educators to engage as many senses as possible
during instruction. In the previous example discussing the management of time,
while developing a timeline of intermediary deadlines accesses the visual and
auditory modes, having the student actually place the classmates’ work in the appro-
priate column employs the kinesthetic sense as well.
Although this example is at the college level, it still can be generalized to
education at all levels. In taking a course in qualitative research for my doctoral pro-
gram in special education I was totally mystified by the professor’s verbal explana-
tion of the process of going from general to specific in the introductory section of a
qualitative research proposal. Part of the challenge may have come from that many
of us on the Autism spectrum tend to be inductive rather than deductive thinkers.
In other words, we tend to need a number of specific examples from which we
can make broad generalizations, which is opposite from the style required for the
qualitative paper.
After a week of futile discussions with the professor and remaining mystified
it suddenly occurred to me that if I converted her words into a graphic made
up of pouring words and phrases into the wide mouth of a funnel with them
A personal reflection 175
coming out the other end in a thin, concise stream, then the process made much
more sense. Overall the instructor was good at what she did. However, I needed to
develop a graphical representation of the concept in order to bridge the gap in my
understanding.
Output
Adapt how the student can respond to instruction.
Output is just the flip side of the processing coin of input. The number of
ways a student can demonstrate mastery of a subject is only limited by the
imagination of the instructor and student combined. Some examples include
responses that are typed, spoken, or pointed at using an assistive communica-
tion device, or even d rawing mind maps. The following discussion illustrates an
example of a student who advocated for himself and even suggested a reasonable
accommodation.
The assignment was to make an annotated list of the components of the
electronic music lab including their functions and interconnectivity. The student
waited until the others left and straightforwardly disclosed his ADHD, which
greatly slowed his penmanship and made it all but illegible. He then stated that he
should accept a failing grade now due to those challenges … or … might he have
permission to draw a map of the electronic music studio to depict the functions of
the components.
Suppose I took the stance that the student should know how to write s imple
paragraphs at this time. And if he could not do so, than perhaps he should drop
the course in favor of him taking a developmental writing class and return next
year when he was ready. However, something told me to let him draw a map
of the studio as he suggested. It was clear that he knew his way around the
equipment.
Being that it was the middle of the semester I knew this student had greater
mastery of the electronic music lab than all the other students, and in some ways
was more advanced than I. Clarity in the goal of assessment is vital here. If the goal
is to measure content then it is the responsibility of the instructor to remove undue
barriers to that student’s success. Not doing so would have caused a student having
the greatest amount of mastery of this subject to potentially receive the lowest
grade in the class – which would be invalid. On the other hand, if I wanted to eval-
uate his writing than it would have been incumbent on me to remove the physical
barrier of writing such as allowing him to use a scribe or speech-to-text software,
provide the answers orally, or use other means.
Difficulty
Match the skill level of the child to the challenge of the work.
There are situations where no matter how many curriculum modifications are
made and how much support is provided, a student may not be able to achieve
176 Stephen Shore
at the same level as their classmates. Therefore, the primary goal for modifying
curriculum or instruction is meaningful inclusion. For individuals in this situa-
tion, adjustments to skill level, problem type, or rules on how the student may
approach their work to ensure they are learning to the greatest extent possible yet
participating in the class benefits everyone.
For example, while it is a worthy goal that a person should be able to engage in
mental arithmetic, for those unable to so, providing a calculator will enable func-
tioning in mathematics. Later, s/he may be able to perform mathematical calcula-
tions without supportive devices.
Multiplication and division were very difficult for me in elementary school.
Fortunately I discovered a slide ruler type contraption called a “multiplier pen-
cil box” and “cheated” when solving multiplication problems. Shortly, I realized
this device could also be used to reverse-engineer the mysteries of long division.
Eventually, I learned the multiplication and division tables through sheer repetition.
Although it was unlikely that teachers understood at that time, the opportunity to
use this device alone in my bedroom in a low stress environment was exactly what
I needed to master multiplication and division. Had I been allowed to use this low-
tech assistive device in the classroom, it would have enabled me to be included in
the mathematically oriented games that the teacher would sometimes have her class
do towards the end of math instruction.
Participation
Make needed modifications to keep the student meaningfully involved.
Also falling into the category of an adjustment that does not rise to the level
of accommodation, it is important for participation to be meaningful to everyone.
For example, suppose a nonspeaking yet very vocal student is included in a chorus
class. Additionally, this student paces. However when pacing, the student is mostly
silent. Frequently vocalizing, it appears meaningful inclusion of this student will be
challenging as this student will have difficulty standing in place and maintaining
pitch, rhythm, and other aspects of singing in a choir.
Focusing on what the student can rather than can’t do will be much more
helpful. Clearly this individual needs to move. There may be body to envi-
ronmental issues related to sensory processing or other reasons, which can be
interesting to ponder. However, finding ways for the student to engage the need
to move may be fruitful. Some possibilities may include keeping tempo on a per-
cussion instrument or improvisational movement to the music where the student
may have an unexpected skill.Yet another possibility might be to have the student
march about the auditorium carrying a flag that is relevant to the music. Finding
a few other students to volunteer to engage in these activities as well will keep
the individuals with special needs from being isolated. In this way the student’s
need to move, the challenges of singing in a group, and the need for meaningful
participation are meaningfully addressed.
A personal reflection 177
Alternate activity
Adapt the goals or outcome expectations while using the same materials.
Again in the same category of a modification rather than an accommodation,
an example from this category might involve expecting a student to locate just the
continents of world rather than the countries and which continents they belong
to or playing a simplified percussion part in a concert. Giving the widely varying
skillset often accompanying Autism its possible that the student may have skills in
areas way beyond the peers.
For example, a child with a deep interest in weather in hurricane- or tornado-
prone states might prepare and deliver a report to the class on causes and safety
when this type of weather occurs. If the student has difficulty communicating in
the spoken word there are many assistive communication devices that could be
used. Third grade found me with a fascination in deep space exploration, which
spurred me to give a presentation on the solar system.
Alternate curriculum
Instruction and materials are varied to meet individual student goals yet remain
aligned with the curriculum and prepare the student to return to the class with
their regular education peers where possible.
For example, a person having difficulty with penmanship due to motor control
issues might be pulled aside for a brief period of time from a writing class to learn
how to type on an AlphaSmart™ or other keyboard device in preparation for
returning to their peers for in-class writing assignments. However, this temporary
“pull out” from the regular classroom activities must not result in “geographical”
inclusion where a student is physically in the same room but works on often unre-
lated materials to the subject at hand, usually with a paraprofessional. This type of
“geographical inclusion” misinforms the regular education students that those with
special needs are very different creatures from the “rest of us” which is totally con-
trary to the philosophy of inclusion.
As a member of grade school musical ensembles, I remember the director asking
students experiencing difficulty playing their part to leave the rehearsal to learn
their part in a practice room. The expectation was that they would return upon
learning their music. This is a good example of alternate curriculum.
the student body is on the Autism spectrum and is engaging with the rest of the
pupils.
Translated to Daily Life Therapy in English, their approach focuses on the three
pillars of physical activity, emotional regulation, and intellectual stimulation for
leading a balanced life. After a period of Initial Stage Guidance the students with
Autism are integrated into classrooms of up to 40 students to a single teacher.
Part of what makes this education work for students with Autism is the
emphasis on community. Whereas in most Western societies, additional support
is provided by educational personnel such as teachers and paraprofessionals, in
the Musashino Higashi Gakuen, this support is provided by the classmates them-
selves whenever possible. In addition to benefitting both students with Autism
and the rest of the class there are two important implications for life in the adult
world. Be it at work, in the community, etc., graduates of the Musashino Higashi
Gakuen will have greater understanding as well as hopefully acceptance and
appreciation of individuals with Autism in the adult worlds of employment, the
community, etc. Similarly the students with Autism will have benefitted from
extended contact and support with the regular education students, easing the
way for integration as adults.
Another interesting aspect about this approach is that it’s the only education
method that is used for both regular education and for students on the Autism spec-
trum. A smaller branch – the Boston Higashi School – employs the same teaching
strategies. However, only children with Autism are taught in this school.
Conclusion
As with Autism, inclusion is also a spectrum of involvement for people with dif-
ferences and disabilities. While 100 per cent inclusion is a goal to strive for, it is
not always possible or even advisable when resources of teacher education, time,
materials, and space are unavailable – especially when academic and/or behavioral
challenges exceed what an educational institution is able to provide in a given
situation.
However, academic and social accommodations are actually merely extensions
of good teaching practice. With greater attention paid to differences in learning
styles and social interaction, “regular” education becomes more accessible to a
greater diversity of students to the benefit of all involved and society as a whole.
What is good for individuals on the Autism spectrum tends to be good for every-
one else as well.
Through the lens of academic modifications to curriculum and delivery of
material we have explored how meaningful inclusion of students with Autism can
be accomplished while benefitting the class as a whole. Inclusion is meaningful
when both the individual with special needs and the other students benefit from
the interaction. Rather than an afterthought, inclusion in education, employment,
and society as a whole is a right of all humans regardless of ability.
A personal reflection 179
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