ATHABASCA UNIVERSITY
UNIVERSITY OF CALGARY
UNIVERSITY OF LETHBRIDGE
SUPPORTING SIBLINGS OF CHILDREN WITH AUTISM
BY
CAROLINE BUZANKO
A Final Project submitted to the
Campus Alberta Applied Psychology: Counselling Initiative
in partial fulfillment of the requirements for the degree of
MASTERS OF COUNSELLING
Alberta
September 2007
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DEDICATION
This project is dedicated to all the amazing siblings I have had the opportunity to meet
over the years.
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CAMPUS ALBERTA APPLIED PSYCHOLOGY: COUNSELLING INITIATIVE
SUPERVISOR SIGNATURE PAGE
Faculty of Graduate Studies and Research
The undersigned certifies that she has read and recommends to the Faculty of Graduate Studies and Research for acceptance, a final project entitled SUPPORTING SIBLINGS OF CHILDREN WITH AUTISM submitted by CAROLINE BUZANKO in partial fulfillment of the requirements for the degree of Master of Counselling.
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CAMPUS ALBERTA APPLIED PSYCHOLOGY: COUNSELLING INITIATIVE
SECOND READER SIGNATURE PAGE
Faculty of Graduate Studies and Research
The undersigned certifies that she or he has read and recommends to the Faculty of Graduate Studies and Research for acceptance, a final project entitled SUPPORTING SIBLINGS OF CHILDREN WITH AUTISM submitted by CAROLINE BUZANKO in partial fulfillment of the requirements for the degree of Master of Counselling.
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ABSTRACT
This project addresses the needs faced by siblings of children diagnosed with Autistic
Disorder by providing an overview of the literature on sibling needs and the benefits of
sibling support groups, and a manual to assist professionals to implement their own
sibling support groups for this population. Once developed, the manual was implemented
as a pilot sibling support group and the parents of the sibling participants evaluated the
group�s effect. The parent responses indicated that the sibling support group was
beneficial for their children as it helped them to better understand autism, cope
effectively with difficult situations, facilitated communication within the family,
enhanced relationships between siblings, and offered peer support.
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ACKNOWLEDGEMENTS
Thank you to Dr. Shelly Russell-Mayhew who provided me with valuable input and
guidance from the beginning of this journey. I would also like to thank individuals from
Society For Treatment of Autism, including Wayne Sklarski who believed in the project
and allowed me to implement the group at the agency; Dr. Kim Ward who supported me
in the early stages of the project; and Glenda Hendriks, who helped make the group a
success. And of course, thank you to the siblings and parents who participated in the
project. Without them this project would not exist. Finally, I must thank Andrew Stewart
whose patience and support helped me see the completion of this project.
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TABLE OF CONTENTS
Page
Chapter I
1.1 Introduction ................................................................................................ 1
1.2 Project Rationale ........................................................................................ 1
1.3 Project Overview ........................................................................................ 2
1.4 Summary .................................................................................................... 3
Chapter II
2.1. Definition of Terms ................................................................................... 4
2.2. Literature Review ...................................................................................... 4
2.2a Autism: An Overview .............................................................. 4
2.2b The Impact of Having a Sibling with Autism ........................... 7
2.2c Services for Siblings of Children with Autism........................... 13
2.2d The Need for Services: Sibling Support Groups ...................... 16
Chapter III
3.1 Methodology .............................................................................................. 22
3.1a The Development of a Sibling Support Group Manual ............. 22
3.1b Piloting the Sibling Support Group.......................................... 24
3.1c Evaluating the Pilot Sibling Support Group ............................. 26
3.2 Considerations from the Literature in the Development of the Group Manual 29
3.2a Group Development for Children............................................. 29
3.2b Developmental Considerations ............................................... 30
3.3 Manual Description .................................................................................... 32
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3.4 Summary .................................................................................................... 34
Chapter IV
4.1 Supporting Siblings of Children with Autism............................................... 35
Chapter V
5.1 Results ........................................................................................................ 98
5.1a Positive Aspects of the Group ................................................. 98
5.1b Benefits of the Group .............................................................. 100
5.1c Areas of Improvement ............................................................. 107
5.1d Future Considerations ............................................................ 108
5.1e Summary ................................................................................ 110
5.2 Discussion .................................................................................................. 110
5.2a Limitations .............................................................................. 113
5.2b Future Research and Considerations...................................... 115
5.2b Implications............................................................................ 116
5.2b Summary ................................................................................ 116
References ....................................................................................................... 117
Appendices
Appendix A:...................................................................................................... 127
Appendix B: SSHRC Notice of Award .............................................................. 129
Appendix C: Letter of Invitation ....................................................................... 130
Appendix D: Consent for Sibling Support Group Participation ......................... 132
Appendix E: Consent for Research Participation ............................................... 133
Appendix F: Interview Guide ........................................................................... 134
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LIST OF TABLES
Table 1: Session-by-Session Curriculum 33
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CHAPTER I
Supporting Siblings of Children with Autism:
An Introduction
Although parent-child relationships are extremely important, sibling relationships may be
even more significant (Dodd, 2004). Siblings usually spend more time with each other than they do
with parents (Lobato, 1990), and the attachment between them is often the longest most individuals
have (Frank, 1996; McHale & Gamble, 1989; Richman, 2001). Sibling relationships represent first
peer relationships (Lobato), are important in the development of social skills in early childhood
(Harris, 1994; Richman), and are associated with lower levels of loneliness and higher sense of
worth (Kaminsky & Dewey, 2001; Verté, Roeyers, & Buysse, 2003).
The importance of sibling relationships is significant when considering siblings of children
with a disability. Non-disabled siblings not only face usual sibling issues such as sibling rivalry, but
also have unique concerns and challenges that are directly related to having a sibling with a
disability, such as extra parental attention devoted to the sibling with a disability, embarrassment by
the sibling�s behaviour, or struggling with complex and confusing feelings (Eisenberg, Baker, &
Blacher, 1998; Meyer & Vadasy, 1994; Powell & Gallagher, 1993). These experiences may alter the
daily lives of non-disabled siblings in significant ways, and may have consequences for their well-
being and development (Crocker, 1981; Grossman, 1972). There is a need to develop programs to
help siblings deal with having a brother or sister with a disability.
Project Rationale
Supporting siblings of children with special needs is an important issue because
approximately 80% of children with disabilities have non-disabled siblings (Atkinson & Crawforth,
1995). Therefore, the majority of families with a child with special needs are affected (Burke &
Cigno, 2000). Furthermore, siblings of children with disabilities have been found to be more in need
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of support than any other family member (Spinetta & Deasy-Spinetta, 1981). Despite these findings,
most research has focused on the child with the disability and the mother, with very little focus on
siblings (Eisenberg et al., 1998). Furthermore, few services exist to help siblings with their unique
needs (Naylor & Prescott, 2004).
The literature has consistently indicated the positive outcomes of support groups for siblings
of children with disabilities, demonstrating the immediate benefits and satisfaction of participating in
these groups (Dodd, 2004; Dyson, 1989; Evans et al., 2001; Lobato, 1990; Meyer & Vadasy, 1994;
Naylor & Prescott, 2004; Powell & Gallagher, 1993; Seligman, 1991). For example, sibling support
groups can address a number of siblings� needs and concerns, such as the need for factual
information about disabilities (Burke & Cigno, 2000) and the need for contact and emotional support
from peers in similar situations (Dodd; Frank, 1996; Lobato).
Almost all interventions developed thus far are outdated and have focused on school-aged
and adolescent siblings (Lobato, 1985; Meyer & Vadasy, 1994; Summers, Bridge, & Summers,
1991). However, younger siblings are just as vulnerable to the same difficulties experienced by
school-aged siblings, such as feelings of confusion and isolation, but programs for this younger
population have failed to address their �probable need for basic information, understanding, and peer
support� (Lobato, p. 345).
Project Overview
This project was designed to address the needs of siblings of children diagnosed with Autistic
Disorder (AD) at an early age. First a synthesis of the literature will aim to determine the needs of
siblings aged 5 to 9 years old with a specific focus on needs that can be met in a sibling support
group. The project culminates in a manual that can be used by professionals to develop and
implement sibling support groups. The goal of the manual is to develop a group for the benefit of
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siblings of children with AD to help them overcome negative effects they might experience and
increase their ability to cope with such experiences.
Chapter one has provided an introduction to this project. Chapter two provides an overview
of operational definitions used throughout the project and a literature review that briefly outlines
what autism is, summarizes the effects of having a sibling with autism, and outlines the need for and
effectiveness of sibling support group. Chapter three summarizes the methodology for this project
including the literature search terms and the process involved in creating the sibling support group
manual. Chapter four is the manual itself and Chapter five describes the results of the pilot project.
Summary
As service providers are faced increasing demands to serve the families they work with, it is
difficult to find the time to research, develop, and implement services for siblings. This project
addresses these difficulties by providing a manual that can be used by professionals working with
siblings of children with AD to develop and implement their own sibling support groups.
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CHAPTER II
Definition of Terms
Before exploring the literature on siblings of children with autism, it is important to delineate
working definitions for a number of terms used throughout this project. To begin, the terms
disability, developmental disability, and special needs have been used interchangeably throughout
this project and refer to children with some form of mental retardation. Normally developing
children refers to children without a disability. The term autism and Autistic Disorder (AD) are also
used interchangeably and refer to children who specifically fit the DSM-IV-TR criteria for AD (as
outlined in the next section). Other Pervasive Developmental Disorders, including Asperger�s
Disorder, Rett�s Disorder, Childhood Disintegrative Disorder, and Pervasive Development Disorder
Not Otherwise Specified are not included in these terms.
Literature Review
Autism: An Overview
What is Autism?
Leo Kanner was the first to describe and name early infantile autism in 1943 (Cohen,
Sudhalter, Landon-Jimenez, & Keogh, 1993). He described a unique group of children who had
failed to develop normal relationships, were upset by changes in their environments, and showed
abnormalities in speech and language (Freeman, Cronin, & Candela, 2002). The terms autistic and
autism derive from the Greek word autos meaning �self.� The �autism� or self-centeredness in these
children was recognized as the primary deficit and the term�s �autism� and �autistic� came to denote
their disorder (Freeman et al., 2002). In 1994, the diagnostic term �infantile autism� was replaced by
�autistic disorder� [American Psychiatric Association (APA), 1994) implying that the autism
phenotype comprises a spectrum of disorders varying in severity, associated symptoms, and
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causality (Eisenmajer et al., 1996; Miles et al., 2005; Myhr, 1998; Ozonoff, South, & Miller, 2000;
Prior et al., 1998; Schopler, 1996).
Autistic Disorder (AD) is a severely incapacitating lifelong developmental disability that
typically appears during the first three years of life (APA, 2000; Lobato, 1990). Autism is more
prevalent (1 in 500 individuals) in the pediatric population than cancer, diabetes, spina bifida, and
Down syndrome; and strikes males about four times as often as females (Rapin et al., 1999). Its
occurrence is generally equal across all cultures, geographic areas, and socio-economic groups
(APA; Wolfberg, 1999).
AD is a neuropsychiatric disorder of early childhood (Miles et al., 2005) that impacts the
normal development of the brain in areas of communication, social interaction, and other intellectual
abilities (Lobato, 1990). There is vast clinical variability within autism (APA, 2000; Beglinger &
Smith, 2001); no two people with autism are the same and may be affected in different ways,
manifesting symptoms that range from mild to severe (Miles et al., 2005).
People with autism often exhibit atypical body movements such as hand flapping and body
rocking (APA, 2000). Many children with autism also engage in various forms of challenging
behaviours (Dawson & Osterling, 1997), such as seemingly irrational fears or temper tantrums, self-
injury, disruption, and aggression. Children with autism often have difficulty attending to social
stimuli, imitating others (Dawson & Adams, 1984), and playing appropriately with toys (Jarrod,
Boucher, & Smith, 1993). In some cases, children have unusual responses to people or attachments
to objects, resistance in routines, and sensitivities in the five senses of sight, hearing, touch, smell,
and taste.
The DSM-IV-TR (APA, 2000) system classifies several subtypes of autism within Pervasive
Developmental Disorders (PDD). These include Autistic Disorder, Rett�s Disorder, Childhood
Disintegrative Disorder, Asperger�s Disorder, and Pervasive Developmental Disorder-not otherwise
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specified (PDD-NOS). These conditions, which all appear within the first years of life, are
characterized by severe and pervasive impairment in the development of reciprocal social
interaction; verbal or nonverbal communication; imaginative activities; or the presence of restricted,
repetitive, and stereotyped patterns of behaviour, interest, and activities. For the diagnosis of AD, the
focus of the present study, all of the above features must be present. That is, the established criteria
to be met for a specific diagnosis of AD, as outlined by the DSM-IV-TR (APA), includes:
! Impairment in social interactions, such as impaired use of nonverbal behaviours, failure to
develop peer relationships, or lack of social reciprocity.
! Impairment in communication, such as lack of spoken language development, difficulty
initiating or sustaining conversations, or lack of initiative play.
! Restricted, repetitive, or stereotypical patterns of behaviours or interests.
! Delays or abnormal functioning with onset prior to 3 years in at least of 1 of these areas;
social interaction, language as used in social communication, or symbolic or imaginary play.
! The disturbance is not better accounted for by a diagnosis of Rett�s disorder or Childhood
Disintegrative Disorder
Autistic Disorder is a clinical diagnosis and diagnostic evaluations are based on the presence of
specific behaviours indicated by observation and through parental consultation (Freeman et al.,
2002).
What Causes Autism?
Currently, there is no known etiology of autism and therefore is no cure for it. Current
research suggests that there are one or more abnormalities in the brain linked to such causal factors
as viral infections, complications at birth, metabolic abnormalities, genetic conditions, and possible
environmental toxins (Baron-Cohen & Bolton, 1993; National research Council, 2001). Although
there is no cure to overcome the disability, treatment is available and generally includes
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interventions that target specific areas of need, such as social skills, language acquisition, nonverbal
communication, and behaviour management (National Research Council).
Families and Children with Autism
The effect of having a child with autism on a family is complex and alters the entire family
system (Lobato, 1990; Powers, 2000). A child with autism is less identifiable as disabled by:
physical appearance, has more of a language deficit, is much less socially responsive, has more
behaviour problems, and shows more unevenness in intellectual skills than a child that has another
type of developmental disability, such as Down Syndrome (Wolfberg, 1999). Because so many
aspects of the child�s development are severely affected and the management of the child�s
behaviour disorder can be very taxing, the potential for negative effects on siblings is great (Lobato,
1990). The impact of having a sibling with autism is explored in the next section.
The Impact of Having a Sibling with Autism
Relatively few studies have evaluated the effects of siblings of children with autism. The
findings of studies that have examined the effects on this population have indicated mixed results.
For example, some researchers have demonstrated that non-disabled siblings of children with autism
are at increased risk for externalizing and internalizing adjustment problems than siblings of children
with other disabilities and siblings of normally developing children (Bagenholm & Gillberg 1991;
Rodrigue, Geffken, & Morgan, 1993). Results indicated greater incidences of depression, anxiety,
loneliness, and problems with peers (Evans et al., 2001; Riebschleger, 1991; Rodrigue et al., 1993),
and higher levels of attention and conduct problems (Rodrigue et al.). In contrast, other researchers
have reported that siblings of children with autism are not at a greater risk for adjustment difficulties
or loneliness (Kaminsky & Dewey, 2002) and do not show decreased levels of social competence
(Rodrigue et al.).
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Discrepancies in the literature may be because many of these studies included small samples
and no comparison groups, thereby making it difficult to generalize results. Inconsistencies may also
be due to various methodological weaknesses, such as widely differing outcome measures, varied
populations and procedures, and the lack of a longitudinal perspective. Outcome measures of
adjustment, often inadequately defined, have included measures of behaviour (Hastings, 2003;
Kaminsky & Dewey, 2002; Rodrigue et al., 1993; Verté et al., 2003), social competence (Kaminsky
& Dewey; Verté et al.), and self-concept (Rodrigue et al.; Verté et al.). The research populations
have ranged from preschool children (Lobato, 1985) to adults (Lobato, 1990; Riebschleger, 1991;
Wolf, Fisman, Ellison & Freeman, 1998), making comparisons difficult. Finally, different
procedures, such as structured questionnaires with the mothers or siblings (Kaminsky & Dewey)
and/or interviews were used, also making comparisons difficult.
In spite of these inconsistencies, the majority of researchers suggested that many children are
adversely affected by the presence of a sibling with disabilities in general (Banks et al., 2001; Burke
& Cigno, 2000; Burke & Montgomery, 2000; Dodd, 2004; Evans, Jones, & Mansell, 2001; Fisman,
Wolf, Ellison, Gillis, Freeman, Szatmari, 2005; Foster et al., 2001; Frank, 1996; Koegel &
LaZebnik, 2004; Naylor & Prescott, 2004; Powers, 2000; Richman, 2001; Richmond, 2004). Indeed,
researchers have shown that siblings tend to share a number of special concerns regarding the
adverse effects of having a sibling with a disability, no matter what type of disability their brother or
sister has (Harris, 1993; Powell & Ogle, 1985; Roeyers & Mycke, 1995). Adverse effects include
reduced parental attention, differential treatment, and restrictions on extracurricular and family
activities. Each of these will be reviewed in the remainder of this section, in addition to other general
difficulties reported by parents and siblings themselves. It is important to note that, because of the
lack of quantity and quality of literature specific to autism, this section was drawn largely from the
broader literature on siblings with a brother or sister with a disability.
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Reduced Parental Attention
A point repeated throughout the literature is that siblings of children with disabilities receive
less attention from their parents because a great deal of parental time is spent caring for the disabled
child (Burke & Montgomery, 2000; Dodd, 2004; Naylor & Prescott, 2004; Wolf et al., 1998). This is
particularly true of siblings of children with autism, as their brothers and sisters often have a full
schedule with programs that use up their parent�s free time (Harris & Glasberg, 2003; Koegel &
LaZebnik, 2004). Further, children with autism may need regular redirection to engage in typical
activities, making it difficult for parents to give their other children as much attention as they�d like
to. Reduced parental attention may lead to feelings of anger, isolation, low self-esteem,
incompetence, resentment, and perceived neglect by the parents (Dyson, 1989; McHale & Pawletko,
1992; Meyer & Vadasy, 1994; Powell & Gallagher, 1993; Wolf et al.).
Differential Treatment
Tension also arises over perceived differential treatment by parents (Furman, 1993). For
example, if the child with autism displays disruptive or challenging behaviours and is not
reprimanded, siblings may feel perplexed or resentful (Banks et al., 2001), particularly when their
parents are less tolerant of their �misbehaviour� (Foster et al., 2001). Candies may be presented to
the child with autism frequently, whereas snacks may not be as easily accessible to siblings
(Richmond, 2004). This may cause siblings to feel like they are �missing out� because they did not
receive the perks their brother or sister did receive. During therapy, they may hear the child with
autism being praised repeatedly and feel jealous (Frank, 1996; Richman, 2001). Siblings may also be
under increased pressure to achieve academically or in sports, in some way compensating for their
sibling�s disability (Naylor & Prescott, 2004). Siblings may resent that their brother or sister is
�playing� when they themselves must work so hard (Frank; Michaelis, 1980). They may feel their
accomplishments have been overlooked, whereas every achievement of their sibling is treated with
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excitement (Seligman & Darling, 1989). Feeling ignored and unappreciated for one�s achievements
may leave lifelong scars on the non-disabled siblings (Seligman & Darling, 1997).
Differential treatment may also affect siblings� behavioural and emotional adjustment
(Jouriles, Norwood, McDonald, Vincent, & Mahoney, 1996; Kerig, 1996; Margolin, Christensen, &
John, 1996; Nixon & Cummings, 1999; O�Brien, Margolin, & Krueger, 1991). Their ability to cope
may be complicated with conflicting emotions, such as rejection, embarrassment, or neglect
(Powers, 2000). Consequently, they may attempt to hide their feelings or act them out
inappropriately (Powers).
Differential treatment may also affect the quality of sibling relationships (Dunn & Stocker,
1989), where siblings may spend less time with each other and may initiate fewer interactions. In
fact, the normal ambivalence of sibling rivalry might be exacerbated when parental energy and
resources flows to the disabled member of the family (Cole & Cole, 1987).
Restrictions on Extracurricular Activities and Family Activities
Parents have discussed the difficulty in coordinating family routines in order to facilitate
opportunities for their non-disabled child to participate in social or sport activities after school
(Burke & Montgomery, 2000). Generally, the child is unable to participate in such extracurricular
activities (Banks et al., 2001; Burke & Montgomery; Dodd, 2004; Dyson, 1989; Koegel &
LaZebnik, 2004; Lobato, 1990; McHale & Gamble, 1989; Naylor & Prescott, 2004; Wolf et al.,
1998), typically because it is too difficult for parents to arrange for it. Missing these activities can be
detrimental because they are so important in the development of cognitive, social, and affective
competencies in children (McHale & Gamble).
Siblings are also aware of the restrictions on their extracurricular activities, as well as family
activities and social occasions (Burke & Montgomery, 2000; Dodd, 2004). For example, social
outings may be cancelled due to supervision problems, and activities at school may exclude one
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parent because the other parent needs to take care of the disabled sibling. Most non-disabled siblings
can recount incidents of vacations cut short or long-awaited trips halted abruptly because of their
brother or sister�s disruptive behaviours (Koegel & LaZebnik, 2004). In general, siblings �miss out�
on certain events and activities because the whole family is unable to take part (Burke & Cigno,
1996).
Other Difficulties
Parents have outlined a number of other adverse effects their child with special needs has on
their non-disabled child, such as problems of noise (affecting siblings� sleep and homework),
embarrassment in having friends over, inability to meet with friends after school, and lost or broken
possessions (Burke & Montgomery, 2000; Dodd, 2004). In addition to these difficulties, siblings
report difficulties sustaining friendships; being bullied; not having much time away from their
disabled sibling; and embarrassment by their sibling�s behaviour, such as excessive self-stimulation
(Banks et al., 2001; Dodd; Koegel & LaZebnik, 2004; Lobato, 1990; Naylor & Prescott, 2004; Wolf
et al., 1998). The latter difficulty, embarrassment by their sibling�s behaviour, is particularly salient
for siblings of children with autism (Roeyers, & Mycke, 1995). Siblings may also feel depressed
because their disabled sibling cannot do all the activities they can do (Naylor & Prescott) and are
more likely to substitute their desired activities for less desired activities to facilitate opportunities
that are more achievable for their sibling (Evans et al., 2001).
As a result of these difficulties, non-disabled siblings are more susceptible to feelings of
anger, guilt, resentment, loneliness, jealousy, and embarrassment towards their sibling, and are at
risk of developing psychological problems and behavioural difficulties (Evans et al., 2001;
Riebschleger, 1991). This is particularly true in families with a disabled child who generates
extremely high levels of distress, as with the child with autism (Fisman et al., 1996). Siblings of
children with autism may face all of these challenges mentioned above, as well having difficulty
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understanding autism and why his or her brother or sister displays certain behaviours (Howlin &
Yates, 1990; Richman, 2001).
Benefits of Having a Sibling with a Disability
It is important to note that, despite the overwhelming number of adverse affects resulting
from having a sibling with special needs, a number of sources have documented several benefits as
well (Eisenberg et al., 1998; Harris & Glasberg, 2003; Powell & Gallager, 1993; Seligman, 1983;
Seligman & Darling, 1989). Indeed, children with a sibling with autism may be provided unusual
opportunities for growth (Seligman). These include an increased understanding of disabilities; closer
family relationships; enhanced maturity; and greater sensitivity, sharing, empathy, insight,
compassion, appreciation, and independence (Banks et al., 2001).
Many siblings take pride in the achievements of their brothers or sisters with autism, such as
learning to speak or learning to play cooperatively (Harris & Glasberg, 2003). Siblings who can
share in such achievements tend to feel closer to their siblings because they have overcome many
challenges together (Harris & Glasberg). Siblings of children with autism expressed greater
admiration for their brother or sister and reported less fighting and competition than siblings of
normally developing children (Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004).
Although some siblings of children with autism demonstrate greater attention seeking, it has
been hypothesized that, as they grow older, they learn to adapt better than siblings of children with
no disabilities, thereby contributing to a more positive self-concept and better social skills (Verté et
al., 2003). As siblings grow older, they demonstrate an enhanced empathic ability towards their
sibling (Pilowsky et al., 2004). Adult siblings have also reported greater patience and tolerance they
might not have otherwise learned had it not been for their brother or sister (Harris & Glasberg,
2003). Some siblings are so positively influenced by their experience growing up with a brother or
sister with autism that they pursue careers in the helping profession (Harris & Glasberg).
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Summary
Brothers and sisters typically share important experiences together. Having a sibling with
special needs may impact these experiences and may adversely affect the non-disabled sibling�s
well-being and development. There is ample evidence demonstrating that the needs of siblings must
be incorporated into services that include supporting sibling initiatives, although few services exist.
The following section explores the services required to meet the needs of siblings of children with
autism.
Services for Siblings of Children with Autism
From the literature, it is apparent that siblings are affected by and may be adversely affected
by the presence of a sibling with autism. Therefore, providing them with support to deal with the
difficulties they may experience is critical to help them create healthy relationships with their
sibling, as well as other family members and peers. However, services are not routinely available for
siblings (Lobato, 1990) and continue to be seriously lacking (Banks et al., 2001; Evans et al., 2001;
Lukens, Thorning, & Lohrer, 2002; Naylor & Prescott, 2004). Most services separate the disabled
child from the family through respite care, leaving limited resources or supports for non-disabled
siblings outside the family (Naylor & Prescott). Insufficient services result in siblings� needs left
unmet (Riebschleger, 1991), thereby compounding the challenges they face (Eisenberg et al., 1998).
Before exploring the need for services for siblings of children with autism, the following section
briefly summarizes what typical treatment for a family with a child with autism might look like.
Overview of Treatment Services
There are numerous treatment options for families with a child with autism. Dawson and
Osterling (1997) have found common elements between different program philosophies contributing
to positive outcomes, such early intervention (i.e., treatment provided at an early age), intensity of
treatment (i.e., average of 27 hours of direct, one-to-one therapy per week), parental involvement
14
(e.g., training parents to teach adaptive skills), integration with typical peers (i.e., placement in an
integrate program with the support of a trained therapist), specialized treatment (i.e., treatment
services designed specifically for autism), multi-disciplinary team involvement (i.e., input from a
number of professional disciplines, such as Speech-Language Pathologist, Psychologist,
Occupational Therapist, Psychiatrist), and emphasis on developing various skills specific to the
individual with autism (e.g., daily living, communication, and social skills). There was no mention in
any of the literature reviewed about how siblings fit into service provision.
Most agencies providing services for families with children with autism incorporate these
elements and gear treatment specifically towards the child with autism. Occasionally parent training
(e.g., information sessions about autism) is provided, but services for siblings of children with
autism are rarely provided.
The Need for Services: Sibling Support Groups
Pinkerton (2001) and Wolfendale (2001) argue for integrated services that can meet the
needs of all family members. In particular, siblings of children with disabilities have needs that
should receive attention as part of a holistic assessment of the family situation (Banks et al., 2001;
Burke & Cigno, 2000; Naylor & Prescott, 2004). Several researchers have identified social support
groups as an important service in meeting these varying needs (Burke & Montgomery, 2000; Dodd,
2004; Evans et al., 2001; Lobato, 1990; Powell & Gallagher, 1993; Powell & Ogle, 1985).
Benefits of Sibling Support Group Membership
The role of support groups has been reported throughout the literature to have a positive
effect on a number of different populations, such as on children�s ability to cope with stressful
events (Printz, Shermis, & Webb, 1999), on adaptive behaviour in school-aged children (Jackson &
Warren, 2000), and on the psychological adjustment of physically abused children (Barrera,
Fleming, & Khan, 2004; Ezzell, Swenson, & Brondino, 2000). Support groups for siblings of
15
children with disabilities have also shown to have positive outcomes (Dodd, 2004; Dyson, 1989;
Evans et al., 2001; Lobato, 1990; Naylor & Prescott, 2004). In fact, there have been no reports of
sibling support groups being harmful (Lobato); the literature has consistently indicated the
immediate benefits and satisfaction of participating in sibling support groups, regardless of the
sibling�s disability (Dodd; Dyson; Evans et al.; Lobato; Naylor & Prescott). Even small-scale
pursuits are worthwhile in terms of improving children�s quality of life and providing support for
parents (Dodd).
The dominant advantage of sibling support groups is that they can address a number of
siblings� needs and concerns, such as the need for factual information about disabilities (Burke &
Cigno, 2000) and the need for contact and emotional support from peers in similar situations (Dodd,
2004; Frank, 1996; Lobato, 1990). This peer support is particularly important for siblings of children
with autism, as they typically report more feelings of shame and embarrassment of their brother or
sister than siblings of children with other disabilities (Roeyers, & Mycke, 1995). Therefore, the
support of peers in a similar situation may be very welcome. Each of the siblings needs listed here
are discussed next, followed by a summary of other related benefits of sibling support group
membership found in the literature.
The need for information. Many brothers and sisters have indicated they need help
understanding their siblings� disabilities and would like to learn more about how to get along with
them, how to ignore their maladaptive behaviours, and how to talk and play with them (Dyson,
1989). The need for information is particularly important for younger children as they have a more
difficult time understanding what is real and may become confused about their sibling�s disability
(Harris, 1994; Harris & Glasberg, 2003). Although they might hear the word �autism,� they may not
understand what it means. It is crucial that siblings are given such information because
misinformation, lack of knowledge, and misunderstanding may contribute to their feelings of guilt,
16
fear, anger, responsibility, and confusion (Powell & Gallagher, 1993; Seligman & Darling, 1989).
Limited or poor information can also be damaging because children typically create their own ideas
(Richman, 2001) and fill in missing pieces to help manage their feelings (Frank, 1996). For example,
siblings of a child with autism may misconstrue their brother or sister�s behaviours because he or she
does not like them, or that their parents give their disabled sibling more attention because they love
him or her more. Siblings may also be confused about such things as how they should respond to
discomforting feelings (e.g., anger and guilt), how to communicate to family and friends about the
disability, or how to relate effectively to their sibling (Seligman & Darling; Wasserman, 1983).
Some siblings may also feel guilty that they caused the disability, which can lead to withdrawal,
depression, suicidal thoughts, and self-destructive and aggressive behaviour (Rolland, 1994). Other
siblings may be concerned that the disability is contagious, believing that if their brother or sister got
the disability, so could they (Harris; Rolland, 1994; Wasserman). Rolland noted:
A sibling�s illness shatters children�s myths that serious health problems and death
happen when a person is old; they lose sense of immunity. Siblings often develop fears
or phobias that even the smallest symptoms may be serious. (p. 220)
Teaching non-disabled siblings about their brother or sister�s disability, about why treatment
is necessary, and about why parents need to be involved, may help dissipate harmful misconceptions
and provide knowledge the children need in order to cope with feelings and situations that may arise
in the family or with peers. It also allows them to gain a better understanding of the disability, its
associated behaviours, and their own situation with less fear or confusion (Lobato, 1990; Richman,
2001; Seligman & Darling, 1997). An increased understanding will also minimize the negative
impact differential treatment can have because non-disabled siblings can perceive and understand the
reasons behind different parental expectations (McHale & Pawtelko, 1992). Explaining the cognitive
17
limitations of their brother or sister, the educational methods used in therapy, and the skills that are
being taught will help siblings be supportive rather than critical and resentful (Seligman & Darling).
It is obvious that an increased knowledge of the sibling�s disability helps minimize a variety
of problems, as outlined above, but many parents find it difficult to know when non-disabled
siblings are ready to know about a child�s disability (Lobato, 1990). Furthermore, some are reluctant
or unsure of what to communicate about the disability, or may try to protect their children by not
talking to them about certain aspects of the disability and treatment (Foster et al., 2001). This results
in non-disabled siblings� having a limited understanding of their brother or sister�s condition
(Seligman & Darling, 1997). Sibling support groups would be advantageous here, because they
provide a rich opportunity for information giving (Beckman, Newcomb, Frank, Brown, & Filer,
1993; Lobato). Furthermore, they allow the children to hear others their own age discuss the
disability in terms they can understand and relate to (Lobato). Participating in sibling support groups
increases siblings� knowledge of, and comfort with, their brother or sister�s disability and associated
challenging behaviours (Dodd, 2004; Dyson, 1989). Consequently, parents have reported that it is
easier to discuss their child�s disability at home because their kids would talk about what they
learned at group, indicating their comfort in discussing the issue (Lobato).
The need for peer support. Siblings benefit not only from the content of the group, but also
from being a part of a shared experience with other individuals who understand each other (Frank,
1996). Support groups provide siblings social support that is important for their well-being and
development. Barrera et al. (2004) defined social support as
� a concept that implies a relationship with others that may result in feelings of attachment,
security, being loved, being part of a group, reassurance of self-worth, availability of
informational, emotional, and material help, and reliable alliance with others. (p. 104)
18
Support groups give siblings an opportunity to meet with other children in similar situations
and share their feelings and experiences. They can learn that their family is not the only unique one
and allows them to speak their mind without judgement and explain the nature of their own family in
a safe environment (Lobato, 1990; Naylor & Prescott, 2004).
Researchers have begun to recognize that support from other families is one of the most
important forms of support available to families of young children with disabilities (Frank,
Newcomb, & Beckman, 1996). In fact, siblings of children with disabilities who receive low levels
of social support have been found to be at risk for psychological maladjustment (Barrera et al.,
2004). A group of peers that share their particular life circumstance has been shown to play the most
important role in the psychological adjustment in children (Varni & Katz, 1997) and has powerful
healing powers (Seligman & Darling, 1997). Not only does it encourage siblings to have interests
and friends outside of the family (Dodd, 2004), it also helps increase their self-esteem and coping
strategies, particularly with negative feelings, such as guilt and anger (Dodd; Lobato, 1990).
Siblings themselves have reported that support groups have helped them deal with their
feelings related to their brother or sister�s disability (Frank, 1996; Lobato, 1990; Powell & Ogle,
1985). Indeed, adult siblings often state that it would have been helpful to meet other siblings when
they were young (Lobato, 1990). Many children feel so guilty about the anger and frustration their
sibling provokes in them that they suppress their emotions completely (Powers, 2000). It is therefore
important to allow them to express their negative emotions, such as hate, anger, fear, and guilt.
Sharing these feelings with others in a similar position helps normalize their feelings and
experiences and helps them understand that they are not alone (Dreier & Lewis, 1991; Nixon &
Cummings, 1999; Richman, 2001). Research has shown that children who have the opportunity to be
around others who know how they feel, without explanation, can be very positive (Burke &
Montgomery, 2001). Shared experiences create a safe environment where members feel free to
19
express their feelings without worrying about how others will react (Dreier & Lewis). This shared
experience provides a sense of belonging and reduces feelings of isolation (Beckman et al., 1993;
Shulman, 1992).
Other benefits. Support groups help siblings overcome frustrations, increase their self-
expression, encourage activities, decrease the occurrence of depression, increase their sense of
acceptance and identification (Beckman et al., 1993), and decrease their sense of isolation (Naylor &
Prescott, 2004). Other benefits reported in the literature include an increased involvement and
improved relationships between siblings, increased independence, increased appreciation for the
strengths of their disabled sibling, and a greater empathy for people with disabilities in general
(Dodd, 2004; Dyson, 1989; Evans et al., 2001). Parents also reported an improvement in family
relations (Evans et al.). Siblings felt the groups helped them make new friends, gave them more
privacy, gave them a chance to be with other children who understood them, helped them express
their own feelings and views about disabilities and difficulties at home, increased their coping
strategies within the family situation, and increased their self-esteem (Dyson; Naylor and Prescott).
The children were able �to steer the group towards a more therapeutic focus, clearly acknowledging
that an expression of feelings about one�s situation helps one to deal with it� (Naylor & Prescott, p.
204).
Additional Considerations
The value of support for siblings of disabled children has clearly been identified. However, it
is important to note that groups may not be beneficial to everyone (Frank, 1996). Some siblings
might find group situations more threatening than helpful, and older children may be embarrassed to
admit their feelings or concerns to others. Consequently, these children may benefit more from a
private, individual approach (Frank). It is important for agencies to take these factors into
consideration when providing services for siblings.
20
Furthermore, the majority of sibling support groups have been developed for school-aged
siblings (Lobato, 1990; Meyer & Vadasay, 1994). Thus, the needs of younger siblings remain to be
addressed. This is noteworthy because they have fewer social connections outside of the family than
older children (Lobato), and they have somewhat unique reactions because they are less able to
understand the information about their brother or sister�s disability (Frank, 1996; Lobato).
Developing and evaluating sibling support groups for younger siblings is an imperative step to
ensure their needs are met as well.
Summary
It is clear that sibling support groups are beneficial in addressing sibling needs. Support groups
provide non-disabled siblings with knowledge about their sibling�s disability and the skills to cope
with their unique situations. However, few services exist, and programs developed specifically for
younger children (e.g., preschool age) are dearth. Further work in this area is essential because even
very young children (two year olds) are aware of behavioural differences between themselves and
their sibling with special needs (Hames, 1998). Up to the age of five, kids are egocentric in their
view of the world (Lobato, 1990) and may misunderstand these differences, along with other aspects
of their sibling�s disability. Younger children are also more likely to misinterpret situations and
blame themselves (e.g., for causing the disability or for the lack of attention from parents) (Hames).
These misunderstandings persist as they get older and may result in an increase of negative feelings,
such as low self-competence, guilt, anger, loneliness, and isolation from others (Lobato). Over time,
non-disabled siblings may internalize and/or externalize these negative feelings (Fisman et al.,
1996), resulting in impairments in the development of their self-esteem and identity (Seligman &
Darling, 1997). Developing sibling support groups for young children that are consistent with their
developmental level is an important step in facilitating their healthy development. Given the
complex nature of autism, developing a support group for siblings of children with autism in specific
21
is important because the potential for negative effects on siblings is great. Support groups would be
beneficial to help siblings understand what autism is and why their brother or sister displays certain
behaviours, thereby overcoming their misunderstandings and its subsequent negative effects.
22
CHAPTER III
Methodology
The Development of a Sibling Support Group Manual
The need to develop services for siblings of children with autism is apparent. One key
element of the present project aims at providing such service. To ensure the fidelity of the services
provided during the present study, to facilitate future research, and to provide a resource for
professionals to implement support groups for siblings of children with autism, a comprehensive
group treatment manual was developed. The manual was designed to be of use to all professionals
regardless of their theoretical orientation. This chapter outlines the processes involved in developing
the sibling support group manual and implementing and pilot testing the sibling support group.
Procedural Outline
The process of developing this project was divided into six steps: 1) reviewing the literature
to establish a rationale and research base for the development of a manual for a sibling support
group, 2) obtaining appropriate approvals, 3) developing the manual content, 4) piloting the manual,
5) evaluating the sibling support group, and 6) incorporating feedback from parents.
Literature review. To begin, a comprehensive literature review was completed to ensure there
was theoretical and empirical support for developing the manual, which was included in chapter two.
The literature review began by examining research conducted on siblings of children with
disabilities in general, and then narrowed its focus on siblings of children with Autistic Disorder
(AD) specifically. The review then focused on services addressing siblings needs, namely, sibling
support groups. Effects of sibling support groups were also examined. Studies conducted by
Bagenholm and Gillberg (1991); and Evans, Jones, and Mansell (2001) were used initially to provide
key terms for researching additional literature in different databases.
23
The literature review was completed using a systematic search strategy. Electronic databases
were searched including: MEDLINE, OVID, PsycINFO, and ERIC. Studies retrieved from the
database searches were included if they were published between the years 1995 to 2005 and written
in the English language. However, older studies were included when relevant. Search terms
included: autism, autistic disorder, siblings, support groups, families, children with disabilities, and
program development. Hand searching followed, based on the references from the articles retrieved
through the electronic searches. Textbooks and manuals were also included in this search. These
resources were used to provide an overview of the literature and facilitated in the development of the
manual.
Obtaining appropriate approvals. In examining the research, it became clear that there is a
serious lack of services for siblings of children with autism. This lack of services provided the main
source of support to continue with the development of the present manual. Given the needs of
siblings of children with autism and the lack of services to meet these needs, the researcher
approached a local agency offering intervention services to children diagnosed with autism. The
Director of Treatment Services at the Society for Treatment of Autism approved the project
(Appendix A). This project was further reinforced with a Canada Graduate Scholarship funded by
the Social Sciences and Humanities Research Council (SSHRC; see Appendix B). Ethical approvals
from the Campus Alberta Applied Psychology (CAAP) Research Ethics Review Committee were
also obtained.
Developing the sibling support group manual. Once the literature review was completed and
appropriate approvals were obtained, the next step in the process was to develop an outline for the
manual. Information included in the manual was obtained from information provided in the
literature. Psychoeducational material, group process literature, literature on group work with
siblings of children with disabilities, and program development literature were used to identify key
24
concepts to include in the manual. Resources on existing sibling workshops, such as the ones created
by Powell and Gallagher (1993), and Meyer and Vadasy (1994) were also referenced in developing
the present sibling support group.
Piloting the manual. Once the manual was developed, it was implemented as a pilot for
siblings of children with autism. A detailed description of piloting the sibling support group is
provided in the next section.
Evaluating the sibling support group. Upon completion of implementing the sibling support
group, a post-group in-depth semi-structured interview exploring the benefits and challenges of
sibling support group membership was conducted with parents of the children who participated in
the pilot project. A detailed description of the evaluation process is provided in a subsequent section.
Incorporating feedback from parents. In order to ensure the manual�s effectiveness, it was
important to obtain feedback from parents regarding what the children learned from participating in
the groups, what they enjoyed, and what areas need to be improved upon. Themes in the feedback
from parents were incorporated into the final manual. Obtaining feedback proved to be an important
stage in the development of the manual as it allowed parents to provide insight regarding the needs
of their children. This ensured that the manual addressed real concerns of its intended audience.
Piloting the Sibling Support Group
Once the manual was developed, it was implemented as a pilot for siblings of children with
autism. Siblings who participated in the group were between the ages of 5 and 9 years at the time of
group participation. The Society for Treatment of Autism (STA) in Calgary, Alberta was selected as
the location for data collection. The researcher wants to acknowledge the contributions of this
agency in her community. STA is an Alberta-based registered charitable organization that provides
comprehensive treatment and educational services for people with autism and related disorders.
The Pilot Group
25
Recruiting group participants. Participation in the study was strictly voluntary. Participants
were recruited in Calgary, Alberta, through STA. Letters of invitation (Appendix B) were distributed
to parents obtaining services from STA who had at least one child diagnosed with AD, and another
child without any diagnosis, the latter of which was between the ages of 5 and 9 years old. The age
range of 5 to 9 years old was selected for several reasons. It was thought that children under the age
of 5 might be too young to appreciate the benefits of a support group. The upper age of 9 years was
selected because there are other sibling support group services that currently exist for children above
this age. The children participating in the sibling support groups were siblings of children who are
already obtaining intervention services from STA. However, the group was not pre-existing � it is a
group that has been developed. Participation in the group could be terminated at any time by the
parent�s request, or at the request of the sibling. Participation in the support group and/or withdrawal
from the group would not adversely affect the sibling or parents in any way. However, in the event
that the child did withdraw from the group, parent participation in the study would no longer be
necessary.
Parents who wanted their non-disabled child to participate in the support group and who were
willing to volunteer for this study contacted the student researcher to participate in the program
evaluation. A study participation package was mailed to each participant�s home mailing address by
the primary investigator. The package included a copy of the letter of invitation, a Consent for
Sibling Support Group Participation form (Appendix C), a Consent for Research Participation form
(Appendix D), and a self-addressed stamped envelope for the return of signed forms to the
investigator. Signed forms were required prior to participation. All participants were treated in
accordance with the Tri-Council Policy Statement (TCPS) ethical guidelines (Athabasca, 2003). It is
important to note here that the group was available to all eligible siblings regardless of whether their
parents agreed to participate in the study.
26
Participants were fully informed about the nature and purpose of the study before agreeing to
participate, and issues pertaining to confidentiality and anonymity were fully discussed. Participants
were told that, with their permission, the interview would be audio taped and transcribed. They were
also informed that, if they wished, a summary of the results would be mailed to them at the
completion of the study.
Group location. Each session was held in a classroom at the STA site.
Group process. The support group ran on a weekly basis for eight consecutive weeks. A
combination of educational and recreational activities was used. The participants learned about
autism and its impact on their siblings. The group discussed their feelings, behaviours their siblings
displayed, why these behaviours occurred, ways of managing difficult situations, and how to explain
autism to others. Role-play scenarios were used to solidify learning.
Evaluating the Pilot Sibling Support Group
Upon completion of implementing the pilot sibling support group, the group was evaluated.
The purpose of the evaluation component was to provide a better understanding whether
participating in the present sibling support group is beneficial for siblings of children with autism
and their families.
A qualitative methodology was utilized because this best reflected the researchers' purpose in
carrying out the research. Qualitative methods emphasize the importance of examining individuals'
subjective experiences and how they understand events in their lives (Leedy & Ormrod, 2005).
Qualitative research is theory-generating and inductive, and explores phenomena about which little
is known (Leedy & Ormrod). Emphasis is placed on the interpretative study of an issue and the
researcher is central to the research process. Indeed, qualitative researchers engage in reflexivity or
critical reflection on both the process and experience of doing research, revealing their subjectivity
27
and exploring how this shapes the research process (Banister, Burman, Parker, Taylor, & Tindall,
1994).
The analytic strategy used in the present project was based in grounded theory. Grounded
theory is an approach that guides the process of analyzing verbal accounts derived from interviews
(Strauss & Corbin, 1990). The focus of analysis is on organizing ideas and generating theory, rather
than collecting data to test existing theories. Grounded theory analysis is an ongoing process in
which data are concurrently collected, coded, and analyzed for common themes and patterns of
meaning. The generated theory is grounded not only in participants' accounts, but also in researcher
subjectivity, which ultimately shapes the whole research process, including the analysis (Henwood
& Pidgeon, 1994).
Participants
Representatives of STA identified a total of nine families as eligible for participation in this
project. All nine families received invitation letters, as outlined above. Four families contacted the
researcher with expressed interest in having their child participate in the sibling support group. The
age range was from six to eight years and the sample consisted of all females. All four of the sibling
participants had younger siblings with a diagnosis of AD. Of the four families, two were also
interested in participating in the evaluation component (i.e. interview) of this project and resulted in
three adult interview participants (n = 3).
Interviewer and Setting
The present author, a Master�s student in Counselling Psychology, conducted all of the
interview sessions. Interviews were conducted in each of the participant�s homes, as this was most
convenient for them.
Interview schedule. The researcher developed an interview guide (Appendix E), but was not
rigidly followed. Rather, the interview schedule provided a guide for topics to be covered in the
28
interview, while allowing participants to freely expand on their answers and to explore related areas.
Questions were generated from the literature.
Data Collection and Analysis
Before their involvement in this study, all participants read an invitation to participate in this
project and completed an informed consent form. Consent forms ensured participants understood the
study. A post-group in-depth semi-structured interview exploring the benefits and challenges of
sibling support group membership was conducted with consenting parents. Other open-ended
questions were used as needed during the interview to clarify the participant�s responses. The
interview varied in length between one and two hours. Each interview began with a brief
introduction in which participants were reminded of the purpose of the study and invited to ask
questions. Interviews were audio taped and transcribed to facilitate coding. Segments of the
transcribed interviews were checked at random against the tapes to ensure accuracy.
Analysis was drawn from semi-structured interviews of three parents whose children
participated in the sibling support group. The method of data analysis that was used to analyze the
data was based on Strauss and Corbin�s (1990) coding procedures. The researcher first immersed
herself in the material through detailed and repeated readings of interview transcripts. Open coding
was then used to identify categories. Coding began by scrutinizing each interview transcript by
breaking down pieces of text (i.e., paragraphs, sentences) into smaller parts and examining and
comparing them to develop conceptual labels. Axial coding was used to organize and further
explicate categories. Through this process data were put back together in the form of categories and
their interrelationships. Selective coding was then used to select a �core� category, integrating all of
the other categories into �an explanatory whole� (Strauss & Corbin, 1998, p. 146). Several topics
(e.g., benefits and challenges of support group membership) were predetermined for discussion
during the interview, however, themes within these topics and how they relate to one another
29
emerged from the interviews rather than hypotheses being created a priori. Reflexivity was also
incorporated into the research process through the interviewer's writing of memos throughout the
entire research process. Anything that may have affected the research process, such as the
interviewer's thoughts and feelings regarding the preliminary interpretations of interview accounts,
were incorporated at the analysis stage.
Data storage. Any and all documents related to the study, including participant consent
forms, interview notes, tapes, and reflective journal notes are stored in a secure, locked filing cabinet
in the principal investigator�s home office. All documents will be stored for three years, after which
time they will be permanently destroyed. Paper will be shredded, computer disks will be erased, and
audiotapes will be cut up and discarded.
Considerations from the Literature in the Development of the Group Manual
In addition to the specific information about autism presented in chapter two, the
development of the manual was influenced by literature on group development for children (Geldard
& Geldard, 2001) and developmental considerations (Piaget, 1929).
Group Development for Children
Session content was organized to help facilitate the development of group cohesion and
universality during the beginning sessions, and peer modeling and feedback during latter stages
(Yalom, 1995). The weekly sessions were developed following Geldard and Geldard�s (2001) steps
for designing a group for children. The steps included to (1) list the goals of the group, based on a
review of the literature; (2) identify useful topics based on the goals (according to the developmental
level of the group members); (3) arrange the topics in sequence to fit the stages of group
development; and (4) include initial and termination sessions in the program. Once general topics
were chosen, more specific topics and goals for each session were created. Once the topics were
established, activities, materials, and procedures to target the topic were outlined.
30
Developmental Considerations
In order to ensure that children will understand presented information, it is important to
present information in a way that is developmentally appropriate for the group. Autism is an abstract
concept and, although young children may use the term, it is not fully understood until an older age
(Glasberg, 2000). Indeed, research has indicated that children�s understanding about various
illnesses, including autism, follows a developmental progression (Berry, Hayford, Ross, Pachman, &
Lavigne, 1993; Bibace & Walsh, 1980; Glasberg; Osborne, Kistner, & Helgemo, 1993).
Developmental influences may lead siblings who are struggling to understand their brother or
sister�s diagnosis to misconstrue information they hear or to create their own explanations when no
other information is available (Glasberg).
Jean Piaget has been an important contributor to current knowledge about cognitive
development (Broderick & Blewitt, 2006). His stage divisions are useful for many purposes,
including understanding how children develop an understanding of concepts, such as illness and
autism. For this reason, developmental considerations for this project are drawn heavily on Piaget�s
work.
Piaget (1929) stated that children develop in three broad stages:
1. the preoperational stage (2 to 7 years old),
2. the concrete operational stage (7 to 11 years old), and
3. the formal operational stage (12 years old to adulthood).
A brief overview of the preoperational and concrete operational stages will be provided, as these
stages reflect the developmental stages of the sibling support group participants.
Preoperational Stage
In this stage, children base their ideas directly on their own experience, rather than using
logic to formulate their thoughts (Bibace & Walsh, 1980; Harris & Glasberg, 2000). Concepts are
31
defined by already existing knowledge the child has. In addition, different experiences may not be
tied together. That is, preoperational thought tends to be focused on one salient feature of an
experience at a time (Broderick & Blewitt, 2006). Because children in this stage are unable to think
about more than one thing at a time, they are unable to discover relationships among facts and may
draw conclusions that seem quite illogical to adults (Broderick & Blewitt).
Concrete Operational Stage
In this stage, logical thinking emerges and children begin to link varied experiences together
when defining concepts (Harris & Glasberg, 2000). Children�s thinking becomes more efficient and
they are able to begin taking multiple pieces of information into account simultaneously and begin to
form relationships among their observations (Broderick & Blewitt, 2006). Children in this stage can
begin to make relationships among their observations.
Understanding Autism
Glasberg (2000) examined the developmental stages of children�s understanding of autism.
She found that, although children�s reasoning progressed through developmental stages, it developed
at a delayed rate compared to norms for illness concepts, such as a cold. Specifically, she found that
all participants (5 through 17-year-olds) demonstrated reasoning within the preoperational stage of
cognitive development when discussing concepts relevant to the definition and etiology of autism.
For example, when asked about how children get autism, children relied heavily on their own direct
observations and were unable to relate one observation to another (i.e., preoperational stage). In
addition, they focused on one concrete and observable symptom (e.g., language delay). Although
children between the ages of 7 and 10 years old were expected to advance past the preoperational
level of reasoning, they continued to demonstrate preoperational reasoning in conceptualizing
autism.
32
Given siblings� need for information, part of the present support group will be
psychoeducational in nature. Factual information will be discussed and new information will be
incorporated through structured exercises. However, reliance solely on verbal discussion with this
group of children is unlikely to be adequate (Lobato, 1985). Therefore, a blend of recreational and
informational activities is incorporated in order to enhance the children�s learning experience. A
variety of activities and materials will be used to teach the children about autism; to help them
recognize their own personal strengths, as well as their brother or sister�s; and to teach them ways of
dealing effectively with difficult situations.
Manual Description
The contents of the manual include three sections. The first section provides an overview of
the information provided in the literature review in Chapter II. The second section outlines
guidelines for implementing the support group for siblings of children with autism. Practical
considerations, including group type (i.e., psychoeducational, recreational), group composition (e.g.,
homogeneous or heterogeneous), group structure (e.g., open or closed), group size, frequency of
meetings, duration of meetings, location, and developmental considerations are also discussed. The
third section outlines the eight-week, session-by-session curriculum used in the present pilot group
(see Table 1). Additional activities that may be added or substituted for any of the suggested
activities for a particular session are outlined to provide group flexibility. The goals of the group are
also provided, outlined as follows:
1. To encourage peer support.
2. To increase sibling understanding of autism.
3. To increase sibling effectiveness in coping with challenging behaviours.
4. To provide siblings the opportunity to express feelings in an emotionally safe
environment.
33
5. To facilitate open communication about autism between siblings and their families.
Given the amount of material to cover in order to meet these goals, the program was organized into
eight, 90-minute weekly workshops. A discussion on how to use the eight-week session-by-session
descriptions is also provided.
Table 1
Session-by-Session Curriculum
Session Description
One: Fun day The purpose of the fun day is to allow all of the kids meet in a fun
environment and to prepare them for the group experience.
Two: Getting to know each
other
The purpose of session two is to formally introduce each of the
participants and their brother or sister with autism. The purpose of the
group, group rules, and confidentiality will also be discussed.
Three: Same and different The purpose session three is to explore similarities and differences
between objects and people.
Four: What is autism? The purpose of session four is to learn about autism, to increase
participant understanding of what it is like to have autism, and to
explore differences between themselves and their siblings.
Five: Identifying feelings The purpose of session five is to increase participant awareness in
identifying their feelings and to increase their comfort when talking
about their feelings.
Six: Siblings aren�t always
angels
The purpose of session six is to remind participants that other children
face similar difficulties with their brothers and sisters, and to provide
strategies to deal with difficult situations.
34
Seven: Having fun and
being proud
The purpose of session seven is to recognize how special everyone is
and to highlight positive experiences between the participants and
their brothers and sisters.
Eight: Review and wrap-up The purpose of session eight is to review the time the kids have had
together and say good-bye to the group.
Appendices to the manual were also produced containing templates for various activities,
along with extra activity and snack ideas. Further information on autism, the effects of having a
sibling with autism, meeting the needs of siblings of children with autism, and developmental
considerations are also included.
Summary
Chapter 3 discussed the methodology of this project, including the development of the sibling
support manual, piloting the manual, and evaluating the sibling support group. Group development
for children, developmental considerations, and a description of the manual were also provided.
Chapter 4 is the manual itself and Chapter 5 will review the qualitative results.
35
CHAPTER IV
Supporting Siblings of Children with Autism
36
Objective
The objective of this manual is twofold. First, this manual will help promote awareness of the needs siblings of children with autism have and the lack of services currently available to adequately meet their needs. Second, this manual provides professionals with a resource to implement services, namely sibling support groups, for siblings of children with autism. By applying the information provided in this manual, professionals can become more accountable in the services they offer their families. They can increase their understanding of the needs of siblings and the benefits of participating in sibling support groups, and use this understanding in implementing their own sibling support groups.
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Table of Contents Page
Section One Introduction 38 Section Two Group Elements 40 Theoretical Orientation 40 Group Composition 40
Group size 40 Gender 40 Age of Members 40 Participation 40 Frequency and Duration of Sessions 40 Setting 41 Dress 41 Supplies 41 Leaders 41 Activities 42 Debriefing 42 Developmental Considerations 43 Confidentiality 44
Section Three Goals of the Group 45 How to use the Session Descriptions 45 The Workshops 46 Workshop # 1 46 Workshop # 2 46 Workshop # 3 51 Workshop # 4 54
Workshop # 5 57 Workshop # 6 61 Workshop # 7 64 Workshop # 8 67 References 69 Appendix A: Autism: An Overview 76 Appendix B: The Effects of Having a Sibling with Autism 78 Appendix C: Meeting the Needs of Siblings of Children with Autism 82 Appendix D: Developmental Considerations 85 Appendix E: Fun Activity Ideas 87 Appendix F: Snack Ideas 90 Appendix G: Face Tag Template 91 Appendix H: Leaf Template 92 Appendix I: Difficult Scenarios 93 Appendix J: Museum of Me Template 96 Appendix K: Star Template 97
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Siblings Support Groups for Siblings of Children with Autism
This manual was designed to help professionals become more knowledgeable about the needs of siblings of children with autism and the benefits of participating in siblings support groups, and to provide a session-by-session outline to implement a support group specifically created for siblings of children with autism. The goal of the manual is to provide a guide for the development of a group for the benefit of siblings of children with autism. The goals of the group include helping siblings overcome negative effects they might experience and increasing their ability to cope with such experiences.
Section One
Introduction
Although parent-child relationships are extremely important, sibling relationships may be even more significant (Dodd, 2004). Siblings usually spend more time with each other than they do with parents (Lobato, 1990), and the attachment between them is often the longest most individuals have (Frank, 1996; McHale & Gamble, 1989; Richman, 2001). Sibling relationships represent first peer relationships (Lobato), are important in the development of social skills in early childhood (Harris, 1994; Richman), and are associated with lower levels of loneliness and higher sense of worth (Kaminsky & Dewey, 2001; Verté, Roeyers, & Buysse, 2003).
The importance of sibling relationships is significant when considering siblings of children
with a disability. Non-disabled siblings not only face usual sibling issues such as sibling rivalry, but also have unique concerns and challenges that are directly related to having a sibling with a disability (Eisenberg, Baker, & Blacher, 1998; Meyer & Vadasy, 1994; Powell & Gallagher, 1993), such as extra parental attention devoted to the disabled sibling, or embarrassment by the sibling�s behaviour. These experiences may alter the daily lives of non-disabled siblings in significant ways, and may have consequences for their well-being and development (Crocker, 1981; Grossman, 1972).
The effect of having a child with autism (see Appendix A for more information on autism) in
particular on a family is complex and alters the entire family system (Lobato, 1990; Powers, 2000). A child with autism is less identifiable as disabled by: physical appearance, has more of a language deficit, is much less socially responsive, has more behaviour problems, and shows more unevenness in intellectual skills than a child that has another type of developmental disability, such as Down Syndrome (Wolfberg, 1999). Because so many aspects of the child�s development are severely affected and the management of the child�s behaviour disorder can be very taxing, the potential for negative effects on the siblings is great (Lobato). Appendix B outlines some of the effects of having a sibling with autism.
Although there is a need to develop programs to help siblings deal with having a brother or
sister with special needs, services are not routinely available for siblings (Lobato, 1990) and continue to be seriously lacking (Banks et al., 2001; Evans et al., 2001; Lukens, Thorning, & Lohrer, 2002; Naylor & Prescott, 2004). Most services separate the disabled child from the family through respite care, leaving limited resources or supports for non-disabled siblings outside the family (Naylor & Prescott). Insufficient services result in siblings� needs left unmet (Riebschleger, 1991), thereby compounding the challenges they face (Eisenberg et al., 1998).
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Several researchers have identified social support groups as an important service in meeting
siblings� varying needs (Burke & Montgomery, 2000; Dodd, 2004; Evans et al., 2001; Lobato, 1990; Powell & Gallagher, 1993; Powell & Ogle, 1985). A number of sibling needs are outlined in Appendix C, along with a discussion on how siblings support groups address those identified needs.
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Section Two
Group Elements Theoretical Orientation This manual is designed to be of use to all professionals regardless of their theoretical orientation. A number of activities and suggestions are provided to allow flexibility and creativity in implementing the group. Group Composition This group is designed specifically for siblings of children with autism. Group Size The recommended number of group participants in this age group is from four to six participants (Akos & Martin, 2003; Corey & Corey, 2002) with at least two group facilitators. Limiting the group size enables everyone to get to know one another better, allows for enough time for all group members to fully participate, and allows leaders to provide dense reinforcement and rewards.
Gender
Mixed gender is suggested whenever possible to provide for more varied perspectives and peer modelling. Age of Members This group is designed for siblings ages 5 to 9 years old. It is not recommended to include members any younger or older than this, because the children�s needs change as they get older. Furthermore, keeping the group close in age helps solidify friendships and helps keep communication in the group at a similar level. Participation Children should attend the group voluntarily and should be given the freedom to engage in activities that is comfortable to them. No child should be required to share his or her feelings during the session and should be given the opportunity to �pass� if they do not want to share. Frequency and Duration of Sessions This siblings support group is designed as eight 90-minute sessions. It is recommended that sessions be conducted on a weekly basis. Because of the sequential nature of the sessions, this is a �closed group� in which it is closed to new members once the group begins. A closed format may also help to facilitate the development of group cohesion (Corey & Corey, 2002). Absences should be kept to a minimum (i.e., no more than two session) in order to maximize the benefits of the group.
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Setting
The setting for the group should be a room that is large enough to allow the children to have
enough space for all of the activities, including a play area and a writing table. The room should have no clutter and allows for comfortable seating. Enough room to sit in a circle is beneficial so that everyone can see each other and spontaneously make physical contact (Corey & Corey, 2002).
In order to ensure privacy, it is best to find a separate room so that no one needs to worry
about being overheard. It is also important that the room be free from outside distractions in order to maintain the children�s attention to group activities. Given the loud nature of some of the activities, it would also be beneficial to have a location in which the children will not cause disturbances to others. Dress
Leaders and children alike should be dressed in casual, comfortable clothes. Overshirts should also be stored for each child to use during messy crafts. Supplies A list of suggested supplies are provided with each session and/or activity outlined in this manual. A variety of toys and activities should also be supplied during unstructured play times. Craft materials should be abundant in order to encourage self-expression. Snacks are also important.
Participation and cooperation should be routinely rewarded each session. Positive
reinforcement to each child and the group should include statements about the specific aspects of behaviour that are valued. A star chart should also be used to encourage participation and positive behaviours consistent with the workshop, as outlined in session one. Because attendance is also important, one reward should be given in instalments, contingent only on child�s attendance. Leaders It would be helpful to have two leaders for the planning and leading of the groups (Newson & Davies, 1994). One leader may be presenting a topic while another may be organizing materials, providing refreshments or attending to individual children. Two people are also helpful in controlling and guiding the children and preventing groups becoming too chaotic. In addition, two leaders working together have the opportunity to discuss what is helpful, how the children are interacting, and what changes should be made for subsequent sessions. Leaders should have experience working with children and a good knowledge of autism and understand sibling needs. The most important quality of leaders is that they enjoy working with children. They should also be able to respect the children�s expertise on what it is like having a brother or sister with autism. Flexibility, a sense of humour, and an enthusiasm for the activities involved in this group are also important qualities for leaders to possess (Meyer & Vadasay, 1994). Indeed, the leaders� enthusiasm for the group will influence the children�s level of enthusiasm to
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participate. Leaders should also be able to demonstrate empathy, be a good listener, provide feedback, and model effective communication (Powell & Gallagher, 1993). Leaders should feel comfortable to be able to use this manual as a guide while incorporating their own creativity and intuition about the groups needs into group activities. Activities It is important to always present information in ways that are developmentally appropriate in order to consolidate learning. Answers should be kept simple for the 5 year olds in the group to understand. For this population, it is useful to provide explanations of autism that are specific, factual, and concrete (Harris, 1994). Because this age group engages in a great deal of fantasy and magical thinking, children may create their own stories about their brother or sister�s autism. For example, a child may think that autism came from getting sick and fears that if he gets sick, he too will get autism. Another might feel guilty about having �bad thoughts� about her brother, thereby giving him autism. It is important to reassure these fears and correct mistaken logic by giving them the simple facts that they need (Harris).
Given siblings� need for information, part of the support group will be psychoeducational in nature. Factual information will be discussed and new information will be incorporated through structured exercises. However, reliance solely on verbal discussion with this group of children is unlikely to be adequate (Lobato, 1985). Therefore, a blend of recreational and informational activities is incorporated in order to enhance the children�s learning experience. A variety of activities and materials will be used to teach the children about autism; to help them recognize their own personal strengths, as well as their brother or sister�s; and to teach them ways of dealing effectively with difficult situations. In order to maintain the children�s attention, it is crucial that the sessions are filled with variation in activities and materials. Activities involving sitting should be followed by ones that allow movement. Be flexible with the children�s needs and adapt each session accordingly. Not all activities need to be completed or can be substituted for other activities.
Because fantasy play is a primary means of expressing feelings in children, it can be useful to encourage the children to learn about autism or deal with their emotions through play and storytelling. Dolls, hand puppets, or other toys would be useful materials to reveal a variety of emotions and dramatizing situations that produce conflict (Corey & Corey, 2002). Debriefing At the end of each session it is important to debrief about what was covered in the session. Specifically, it is important to repeat the point that autism is a spectrum disorder and that children with autism are more different than they are alike. Therefore, everyone�s siblings may have different levels of functioning, but that no one is better or worse than the other. In addition, not everything that is talked about in the group may be applicable to everyone�s sibling, so it is important to talk to their families about what they learned and how it relates to their own brother or sister. It is also important to emphasize that there are always exceptions to what is discussed in the group. For example, although the group may talk about how difficult some of the sibling behaviours are,
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sometimes children misbehave whether or not they have autism, so it would be inappropriate to say that one�s sibling does something just because he or she has autism. Developmental Considerations
In order to ensure that children will understand presented information, it is important to determine what type of information a child will understand at his or her particular developmental stage. Autism is an abstract concept and, although young children may use the term, it is not fully understood until an older age (Glasberg, 2000). Indeed, research has indicated that children�s understanding about various illnesses, including autism, follows a developmental progression (Berry, Hayford, Ross, Pachman, & Lavigne, 1993; Bibace & Walsh, 1980; Glasberg; Osborne, Kistner, & Helgemo, 1993). Developmental influences may lead siblings who are struggling to understand their brother or sister�s diagnosis to misconstrue information they hear or to create their own explanations when no other information is available. It is therefore important to present information in a way that is developmentally appropriate for the group.
Jean Piaget has been an important contributor to current knowledge about cognitive
development (Broderick & Blewitt, 2006). His stage divisions are useful for many purposes, including understanding how children develop an understanding of concepts, such as illness and autism. For this reason, developmental considerations for this project are drawn heavily on Piaget�s work.
Piaget (1929) stated that children develop in three broad stages: 1. The preoperational stage (2 to 7 years old), in which children base their ideas directly
on their own experiences and do not understand concrete logic; 2. The concrete operational stage (7 to 11 years old), in which children begin to think
logically about concrete events and are able to make relationships among their observations; and
3. The formal operational stage (12 years old to adulthood), in which people develop the ability to think about abstract concepts.
A brief overview of the preoperational and concrete operational stages is provided in Appendix D, as these stages reflect the developmental stages of the sibling support group participants.
When considering developmental levels, it is important to present information in ways that are developmentally appropriate in order to consolidate learning. The following guidelines, adapted from Harris and Glasberg (2003), should be used when implementing a support group for siblings of children with autism:
1. Keep explanations of autism simple, using specific, concrete behaviours. a. For example, explain that children with autism may not talk because they have not
learned how.
2. By 6 or 7 years old children often use �because� to explain physical events. However, their explanations may be based on mistaken ideas (e.g., a child may assume one friend is older because she is taller).
a. Siblings in this age group engage in magical thinking and may create stories about their brother or sister�s autism (e.g., autism is contagious). In these cases it is
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important to reassure any fears associated with this thinking and provide accurate information with simple facts (e.g., autism can�t be �caught�).
Harris and Glasberg (2003) outlined a number of early topics to discuss with children about
autism, including autism is not contagious and autism is nobody�s fault. Suggested materials to help children learn about autism include a variety of toys (e.g., dolls, figurines, doll houses). Storytelling, role-playing, and playing with toys are all effective means in helping children reveal a variety of emotions, discuss their concerns, and problem solve difficult situations. (Corey & Corey, 2002; Newson & Davies, 1994).
Confidentiality
The issue of confidentiality is involved in every sibling support group. It is likely that the participants will talk about private family matters in the group, so it would be important to remind parents that their child may share information openly to the group. In turn, because it is important to have a positive effect on family communication, participants should be encouraged to talk about what they are learning to their parents.
Leaders need to respect the participants� right to privacy and should not discuss what
participants say within the group, although it would be appropriate to inform the parents how their child behaves during the group and what the group is learning. Although the participants are told that what they share in the group is confidential, it is important to let them know that there are limits to confidentiality and some things would need to be reported. Specifically, if a child has revealed information that indicates a violation of Canadian laws regarding child welfare and/or protection, then the program leader must inform the appropriate authorities, which may include parents, and law enforcement agencies.
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Section Three
Goals of the Group
The goals of the siblings support group for children with autism are: 1. To encourage peer support. 2. To increase sibling understanding of autism. 3. To increase sibling effectiveness in coping with challenging behaviours. 4. To provide siblings the opportunity to express feelings in an emotionally safe environment. 5. To facilitate open communication about autism between siblings and their families.
How to Use the Session-by-Session Descriptions
1) A complete description of activities, discussion questions, and required materials are
provided for each of the eight sessions. 2) Depending on the length of discussions, it may be difficult to get through each of the
activities outlined in any particular session. Nonetheless, it is important to ensure that no activity is left uncompleted and should be continued in the next session if time runs out.
3) Additional activities are included for some sessions to promote flexibility within the group to ensure the children�s needs are addressed appropriately.
4) Always ensure there is a �fun� activity (e.g., game) in each session. The purpose of these fun activities is to have fun, develop peer support, and maintain participant interest in the group and attention during discussions. Although fun activities are suggested for each session, these can be changed at the leader�s discretion. Appendix E outlines additional ideas for fun activities.
5) Provide a snack at each session. Appendix F outlines ideas for snacks.
Promoting Generalization
There are a number of ways in which leaders can help children acquire new skills that will help them in real-life situations outside of the group, including using language and vocabulary that the children are most likely to encounter outside the group
Encouraging Group Discussion During discussions, leaders should avoid being too quick to answer questions and instead encourage the children to ask their questions to peers. Asking open questions, such as, �How have others dealt with that situation?� �What suggestions do others have?� are helpful in stimulating discussion and finding alternative ideas that the leader may not have thought of. There are usually no right or wrong answers so it is important to allow the children to share their ideas. Praising each child specifically for speaking to one another, rather than directly to the leader, can also help encourage children to participate in discussions.
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The Workshops
Some of the presented activities have been adapted from the following sources: Jones� (1998) 104 Activities That Build: Self-esteem, Teamwork, Communication, Anger Mangagement, Self-discovery, And Coping Skills; Meyer and Vadasay�s (1994) Sibshops: Workshops for Siblings of Children with Special Needs; Powell and Ogle�s (1985) Brothers and sisters: A special part of exceptional families; and Newson and Davies� (1994) Supporting the siblings of children with autism and related developmental disorders.
Workshop # 1: Fun Day!!! Purpose: ! To meet and have fun!!! ! To instil excitement about the group and prepare participants for the group experience.
Materials: None Procedure:
1. This is all about having fun. Fun outings (e.g., zoo, amusement park, climbing park) are recommended for the kids to get the chance to meet each other and have fun.
Workshop # 2: Getting to know each other
Purpose: ! To formally introduce everyone to the group and to each other ! To discuss rules and confidentiality ! To help encourage kids communication about themselves and their families ! To introduce everyone to each other�s sibling ! To define autism briefly ! To outline topics participants would be interested in for future sessions
Activities: Wild Face Tags Materials: Stickers
Self-adhesive nametags Face tags (see Appendix A for template) Markers/pencil crayons/crayons
Procedure: 1. Group leaders should have a nametag already made to use as an example for the participants. 2. As the children arrive, have them choose a �face� outline that best matches their own and
decorate it to resemble themselves. Have them also write their name on the regular nametag and decorate it as they would like.
3. When completed, attach the face tag with the nametag and ask the participants to wear them for the remainder of the session.
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Icebreaker Game: Web of Connection Materials: ball of yarn or string Procedure:
1. The leader begins by saying one thing he/she likes (or likes doing, etc.). Anyone who likes the same thing can put up his or her hand. The leader will then hold on to one end of the string and pass to another participant. Each player should hold the string, state one thing he/she likes, and pass to someone else, thereby making a �web.�
2. Ensure everyone gets the string at least once. 3. If the group is small everyone may get more than one turn passing the string.
Group Introduction Materials: Whiteboard + marker
1 beanbag or ball One container for each participant (with their name on it) Procedure:
1. Leaders begin by introducing themselves and share one thing they like (or like doing). 2. Children then go around the group and share their names and one thing they like (or like
doing). a. Provide an opportunity for the group to ask 1 or 2 questions to each participant. b. Once everyone is introduced, play �bean bag toss� where the children have to call out
someone�s name before tossing the beanbag. No one can toss the bag to the same person twice.
c. Once the game is finished, give a star to everyone who can remember everyone�s names and a bonus star if they can remember what each person likes (stars will be explained later).
3. Explain the goals of the group. Important points to consider are provided here: a. Everyone is part of a special family with a brother or sister who has autism. b. Everyone will be learning about autism and will have a chance to share what it is like
to have a brother or sister with autism. c. Everyone will have a chance to ask questions and to talk about both the good and bad
parts of having a brother or sister with autism. d. The group will meet every week for one and a half hours. Each session will include
games, activities, snack, and free play. e. The board will be used whenever someone participates in activities and discussions or
helps others out. Stars will be given and at the end of each session one token will be given for every star earned. At the end of all the sessions tokens can be traded to �buy� something from the surprise store (so the more they participate and the more meetings they attend, the more tokens they can earn).
4. Provide an overview each session (see Table 1). Encourage the group to ask any questions they may have or to offer suggestions of any topics they would like to discuss.
Table 1
Session-by-Session Curriculum
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Session Description
Two: Getting to know each
other
The purpose of session two is to formally introduce each of the
participants and their brother or sister with autism. The purpose of
the group, group rules, and confidentiality will also be discussed.
Three: Same and different The purpose session three is to explore similarities and differences
between objects and people.
Four: What is autism? The purpose of session four is to learn about autism, to increase
participant understanding of what it is like to have autism, and to
explore differences between themselves and their siblings.
Five: Identifying feelings The purpose of session five is to increase participant awareness in
identifying their feelings and to increase their comfort when talking
about their feelings.
Six: Siblings aren�t always
angels
The purpose of session six is to remind participants that other
children face similar difficulties with their brothers and sisters, and
to provide strategies to deal with difficult situations.
Seven: Having fun and
being proud
The purpose of session seven is to recognize how special everyone is
and to highlight positive experiences between the participants and
their brothers and sisters.
Eight: Review and wrap-up The purpose of session eight is to review the time the kids have had
together and say good-bye to the group.
5. Discuss confidentiality with the group. Important points to consider are provided here:
a. This is a place where everyone needs to be comfortable about talking about their thoughts and feelings. Stress the importance of respecting what everyone has to say. Also important to mention leaders will not share anything that is said in the group to anyone outside of group, including parents, unless the children want them to share
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more. There is one exception, that is, if anyone tells a leader that someone is going to get hurt.
b. Explain that many parents will be interested in knowing what everyone learns in the group. Therefore, everyone is allowed to talk about what happens in the group to their parents, but it is important to try not to use anyone else�s names.
c. Questions? 6. Discuss the rules of the group to outline expectations. Useful suggestions are provided here:
a. Talk in regular voices � no screaming or yelling. b. Everything said in the group is important - listen to each other and take turns talking.
Leaders can choose to ask the children to raise their hands, if needed. c. Important to respect what everyone says � there are no dumb questions or answers. d. It is okay if anyone wants to �pass� on an activity � just let the leaders know. e. Upon arriving there will always be an activity to do while others arrive. f. During free play it is important to ask for anything on shelves. Everything must be
cleaned up once finished with. g. Sharing is important: be sure to ask to share, rather than pulling something away. h. It is important to tell a leader if you feel angry or upset about anything that happens in
the group so they can help make things better. i. If any rules get broken, a warning will first be given. If the rule is broken again, a
time-out will be given. If rules continue to be broken, the parents will be talked to and participants may be dismissed from the group.
j. Questions? k. Give participants a star for every rule they can remember.
7. Ask participants about topics they would like to talk about in future sessions with the group. 8. Provide a tour through the group area.
Introducing Our Brothers and Sisters Materials: Two puppets Procedure:
1. Stage a puppet show about two characters. One puppet pretends that he/she has a brother or sister with autism while the other puppet asks him/her questions about the brother or sister (e.g., what is his/her favourite food? What does he/she like doing?)
2. After the puppet introduces his brother/sister, allow each participant to introduce his/her brother/sister and two things that he/she enjoys.
a. Allow the group to ask each other questions about their siblings. 3. Provide one star for everyone who participated in this activity.
Snack I�m the Expert!!! Materials: Puppet
Whiteboard/flipsheet + marker Procedure:
1. This activity can be done in conjunction with snack.
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2. The puppet can start the discussion by stating, �I don�t know anything about autism. You guys all have a brother or sister with autism, right? What would you like to tell me about autism?�
3. Write each of the participant�s thoughts on the whiteboard. Encourage discussion about each point and provide lots of reinforcement for each contribution.
4. Provide one star for everyone who participated in this activity. Introducing Our Families Materials: White drawing paper
Markers/pencil crayons/crayons Procedure:
1. Have the participants draw their whole family doing something fun, including their brother/sister with autism. Let them know these pictures will be used again in another session, so if they want to draw a picture to take home with them today, they can do so if time permits.
2. Encourage the participants to ask each other questions about their pictures and family members (e.g., what they are doing in the pictures, age of siblings, the schools the kids attend, etc.).
3. Provide one star for everyone who participated in this activity.
Exploring adaptive equipment Materials: adaptive equipment (e.g., handiwriter, sit-n-move cushion, weighted vests) Procedure:
1. Each week, equipment that kids with autism typically use will be introduced to the group. It is important to talk about what the equipment is used for and allow each participant the opportunity to try the equipment.
2. For the first session, use objects that the participants use themselves on a regular basis. For example, show them normal eating utensils and then show them how they can be modified to meet the abilities of the intended user.
3. Ask the group if they can identify any adaptive equipment their own brother or sister might use.
Wrap-up
• Briefly review what activities the group did today and ask what they learned or enjoyed doing.
• Review the number of stars each participant earned and provide him/her with the same amount of tokens. These should then be placed in a container labelled with their name. Leaders will hold on to these containers until the end of the workshops.
• Reminders o Ask the children/parents to bring a picture of themselves and their brother/sister for
the next session o Ask the parents if there is a piece of adaptive equipment their child can bring in (or
talk about what adaptive equipment is used at home).
Extra activity ideas:
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Planting Pots Materials: Small pot
Potting dirt Plant seeds Procedure:
1. Provide each participant with a pot with dirt already inside and seeds. 2. Demonstrate how to plant the seeds in the pot. 3. Tell the children that they will take care of their plant each week and will be able to take it
home with them at the end of the workshops.
Workshop #3: Same and Different
Purpose: ! To explore similarities and differences between objects and people.
Activities: The Book of �Us� Materials: paper
crayons/markers/pencil crayons Procedure:
1. Have the kids fold their paper in half to make a book. 2. Open the book and write their sibling�s name on the top of one side and their name on the
other. 3. On their sibling side, write or draw some of their brother or sister�s favourite things (e.g.
food, games, toys, etc,). On their own side, have the child write or draw their favourite things, ensuring to match categories.
4. Tell the group that the books will be used for later discussion.
Introducing Same and Different Materials: Different colours of construction paper
Variety of pictures of different objects, such as plants or vehicles (about 10-12) Procedure:
1. Show the group two colours of the same size construction paper. a. Encourage discussion about first how they are the same and second how they are
different b. Ask the group who likes which colour. If everyone picks the same colour, the leaders
should state that they like the opposite colour. Then discuss how different colours does not mean that one is worse or better than the other, just different and that a variety of colours makes our world beautiful. It is also important to note that people can like different things from others.
2. Repeat this discussion with the pictures. 3. Provide one star for everyone who participated in this activity.
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Fun Game: Triangle Tag Materials: None Procedure:
1. This is the same idea as tag. 2. Break group in to teams of three or four. 3. Have each group identify the person to be �it� (tagger) and one person to be the �mark�
(taggee). 4. Everyone except the tagger should hold hands to form a circle. The circle will then move as
needed to protect the taggee from being tagged from the tagger. 5. Give everyone the chance to be �it� and the �mark.�
People Can Be the Same and Different Materials: Variety of pictures of different people (about 4)
Procedure:
1. Show the children two pictures of different people. a. Encourage discussion about characteristics of each person in the picture, such as hair
colour, gender, or age. b. Remind the group about the previous discussion about how things can be same
different. So can people. Encourage further discussion about first how they are the same and second how they are different. It is important to note that even though people are different, no one is better than the other.
4. Repeat this discussion with the rest of the pictures. 5. Provide one star for everyone who participated in this activity.
Snack Examining Perceptions Materials: 2 identical circular arcs with sameness thickness
Procedure:
1. This activity can take place in conjunction with snack. 2. Place the arcs on a table, one above the other, and ask the group which is bigger. 3. Place the arcs on top of each other to show that they are the same. 4. Discuss how things may look different on the outside but are really the same. Relate this to
brothers and sisters with autism. 5. Provide one star for everyone who participated in this activity.
We Can Be Same and Different From Our Brothers and Sisters Part I Materials: The Book of �Us� the group made at the beginning of the session Procedure:
1. Have each participant share his/her book and compare sides, discussing how many things are similar or different from his/her brother/sister.
2. Provide one star for everyone who participated in this activity.
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Fun Game: Group Juggling Materials: 6 beanbags or soft balls Procedure:
1. The leader will begin by tossing one ball to someone across the circle, who will then throw to someone else across the circle, so on until everyone has received the ball once.
2. Tell the group that they will always throw the ball to the same person. Establish the pattern of throwing the ball.
3. Once the group is comfortable, add another ball � always throwing to the same person. 4. Keep adding balls until it becomes too difficult. See how many balls the group can �juggle.�
We Can Be Same and Different From Our Brothers and Sisters Part II Materials: envelopes a picture of each sibling with autism a picture of each participant Procedure:
1. Review last discussion of same and different. a. Explain that we can be same and different too � from each other, and from our
brothers and sisters. 2. Give the children an envelope and a picture of themselves and of their brother/sister. Have
them place their own picture in the envelope and place the envelope into a hat. Participants will hold on to their brother/sister�s picture. Allow each participant to take turns picking an envelope from the hat, ensuring it is not their own.
a. Each child will take turns showing the picture in their envelope to the rest of the group.
b. Whoever�s picture is chosen will show the group the picture of his/her sibling. The participant should share his/her sibling�s name, age, something he/she has troubles with, and something that he/she is good at.
c. While both pictures are being held up, ask the group how the siblings are same and different from each other.
3. Provide one star for everyone who participated in this activity. Exploring adaptive equipment Materials: adaptive equipment Procedure:
1. Discuss what the equipment is used for and how it may help the group�s brother/sister. Wrap-up
• Briefly review what activities the group did today and ask what they learned or enjoyed doing.
• Review the number of stars each participant earned and provide him/her with the same amount of tokens to put in his/her container.
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Workshop # 4: What is Autism? Purpose: ! To increase group cohesion ! To learn about autism ! To increase understanding what it is like to have autism ! To explore differences between ourselves and our siblings
Activities: Butterfly Pencil Topper Materials: fun foam
pencils paper for template
black pipe cleaners glue
sequins scissors Procedure:
1. Fold piece of paper in half. On the fold, draw a heart shape without the point at the bottom (the point extends beyond the fold). Cut. Open paper, it should look like a butterfly!
2. Once satisfied with the butterfly shape, use it as a template to trace on fun foam. Cut. 3. Fold the fun foam butterfly shape in half, and make two small slits close together, in the
centre. This is where your pencil will fit. 4. Decorate the butterfly pencil topper. 5. Insert a pencil through the two slits. 6. Take a black pipe cleaner and cut it in half. Twist around the front of the pencil in the front
of the butterfly and make a loop at the tip of the antennas. Learning About Autism Materials: Book about autism (optional) Procedure:
1. Provide a brief description about autism. �Children with Autism: A Booklet for Brothers and Sisters� is a good resource to use. This booklet can be used to outline what children with autism have in common but how they are all different too.
2. Encourage the group to ask questions about autism. 3. Different topics to discuss could include:
a. Why their brothers/sisters come to a special school b. Because the participants are �experts� on autism, they can help teach each other what
they know. i. Kids can role-play how their brother or sister acts, walks, talks, and so on. It is
important to stress that this is to give information and not to make fun of them.
c. Discuss differences and similarities between siblings and demonstrate how varied kids with autism can be.
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4. Encourage the group to discuss autism and how it affects their brother/sister. 5. Provide one star for everyone who participated in this discussion.
Fun Game: Hide and Seek Materials: none Procedure:
1. One seeker counts to 20 while the rest of the group goes and hides. 2. Have everyone taking turns hiding and seeking.
Getting the Facts Note: break this discussion into two 15-minute segments, with a quick break in between. Materials: 2 puppets Procedure:
1. Using the puppets, begin a discussion about the group�s fears, worries, and concerns about their brother or sister�s autism. To start, have the puppets talk about their fears about �catching� autism.
a. One puppet might discuss that he/she is worried about getting autism because no on knows what causes it.
b. Ask the group when they have felt scared about �catching� autism. Questions to consider include:
i. What made you worry about catching autism? ii. Did you ever feel you caught autism? How did you feel?
iii. How did you realize that you don�t have autism? How did you feel? c. One puppet can talk about a time he/she thought she had autism because she had a
hard time doing math. But, she realized that she did not have autism, she just needed to work a little harder to learn it.
i. See if children have other examples of a time they thought they had autism because of a similar �symptom� but realized it did not mean they had autism at all.
2. Discuss any other concerns that the group raises. 3. Provide one star for everyone who participated in this discussion.
Fun Game: Stolen Puppy Materials: 1 stuffed puppy (or another stuffed animal) Procedure:
1. Split group into two teams. Have teams sit in on the floor facing each other across the room. 2. Place the stuffed toy in the middle of the room. 3. Give members of the first teams a number. Give the same numbers to the members of the
second team. 4. Call a number. The two opponents with the same number race to get the toy in the middle of
the room and bring it back to their seat without being touched by their opponent. Ability Can Be the Same and Different: Part I
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Materials: none Procedure:
1. Open the activity by discussing how people are good at different things and not everyone is able to do what others can do.
a. Encourage the group to imitate the leaders doing the following activities: i. Wiggle ears
ii. Whistle iii. Make a raspberry sound iv. Wink v. Raise one eyebrow
vi. Rub their tummy and pat heir heads vii. Touch their arms behind their backs
viii. Repeat a tongue twister 2. Encourage the group to discuss things they are good at and things they have a hard time with
(can use examples from step one). a. Ask the group about ways in which they can do some of the same things their
brother/sister can do and some the things that they can do but their brother/sister cannot do (and vice versa).
i. Discuss strengths each child has. ii. Encourage participants to also talk about the adaptive equipment that
brothers/sisters might use to help them do things (e.g., �my brother can write if he uses a handi-writer�)
b. For each example it is important to reiterate the fact that one child is not better than the other, just that people are the same in some ways and different in others.
c. Discuss how sometimes people are really good at some things and not very good at others. Autism can be the same way: impairing someone�s functioning in one area of development but not another area. Encourage the group to come up with examples.
3. Provide one star for everyone who participated in this discussion. Snack Ability Can Be the Same and Different: Part II Materials: marker
prescription glasses oven mitts
paper earmuffs
shape sorter sunglasses covered with masking tape
Procedure:
1. Review how brothers and sisters with autism may find things hard to do that we think is easy. Now the group is going to try and do things that would normally be easy but will be given a �disability� to make it harder for them. Here are some examples of stations that can be set up:
a. Have the first participant read a message. Without being able to talk have the participant �tell� their partner the message. Messages can include:
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i. I want my teddy bear/juice/etc. ii. I want to play on the computer/watch a movie
iii. I want to go to the park/store/swimming/McDonald�s iv. I am scared v. The noise hurts my ears
vi. I want you to play with me vii. I want to be alone
Briefly discuss how children with autism often rely on behaviour to communicate and it can be difficult to understand them � it can be frustrating!
b. Complete a shape sorter with covered sunglasses. c. Take off and put on their shoe with only one hand. d. Write their name with oven mitts. e. Walk in a straight line across the room wearing prescription glasses f. Have one participant quietly read a message to a partner who is wearing earmuffs
4. Debrief with the group what the experience was like and what activities were easy or hard for them.
5. Provide one star for everyone who participated in this activity. Exploring adaptive equipment Materials: adaptive equipment Procedure:
1. Discuss what the equipment is used for and how it may help the group�s brother/sister Wrap-up
• Briefly review what activities the group did today and ask what they learned or enjoyed doing.
• Review the number of stars each participant earned and provide him/her with the same amount of tokens to put in his/her container.
Workshop #5: Identifying Our Feelings
Purpose: ! To increase awareness in identifying feelings ! To increase comfort talking about positive and negative feelings
Activities: Free play/coloring Identifying Our Feelings Materials: whiteboard/flipsheet + maker Procedure:
1. Have a leader model different facial expressions (e.g., happy, sad, mad, scared). a. Get the group to close their eyes and have the leader make different sounds and have
the group guess whether it is a happy or sad sound.
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2. Have the group take turns expressing different emotions. a. Get the group to take turns making happy or sad sounds.
3. Brainstorm all different feelings and list on a whiteboard/flipsheet a. As the group offers suggestions, ask them what sorts of things they do when they
have these feelings (e.g., when happy they smile; when mad they stomp and yell). 4. Provide one star for everyone who participated in this discussion.
Snack Feelings About Our Siblings: Part I Materials: 2 puppets Procedure:
1. Introduce feelings about brothers and sisters with autism. Have the puppets discuss some of their good and bad feelings about their brother/sister. Important to have leaders emphasize the fact that feelings may be different and that sometimes people feel guilty about having bad feelings.
2. Encourage the group to share their good and bad feelings about their brother/sister. 3. Provide one star for everyone who participated in this discussion.
Inside/outside Feelings Materials: brown paper lunch bags
magazines Glue
markers/crayons/pencil crayons Scissors Procedure:
1. Set up a craft table with magazines, glue, markers, and so on. 2. Provide each participant with a brown paper lunch bag. 3. Have each participant cut out pictures/words/sayings depicting their feelings about having a
brother or sister with autism. 4. Have the participants glue/write/draw their �inside� feelings inside the lunch bag and the
feelings they show on the outside on the outside of the bag. a. Encourage the group to discuss their craft with their family.
5. Provide one star for everyone who participated in this discussion. Feelings About Our Siblings: Part II Choose an appropriate discussion topic, depending on what common feelings were identified in the previous discussion. Below are examples of discussions about embarrassment and anger. Adapt to include other topics, as needed. Embarrassment Materials: whiteboard/flipsheet + marker Procedure:
1. Explain how our thoughts about something can change how we feel about it. For example, if you take your brother/sister to the store and you notice people staring at you, you might think
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�I hate people staring at us like we�re weird!� Ask the group how they would feel if they had that thought (e.g., sad, angry, embarrassed).
2. But, if instead you think, �I�m not going to let those stares ruin our trip to the store� you might have feelings of pride and love.
3. Brainstorm different potentially embarrassing situations and discuss different responses people can have in those situations.
4. For example, in the situation above, participants can choose to ignore the people staring at them or could ask them if they would like to meet his/her brother/sister.
5. Provide one star for everyone who participated in this discussion. Anger Materials: whiteboard/flipsheet + marker nerf ball Procedure:
1. Explain to the group that everyone gets angry sometimes � it�s a very natural emotion. However, it is what we do with that anger that is important. If we let it grow inside ourselves we can make ourselves upset or it might explode and make us yell or cry etc.
2. Create two columns � one for appropriate and one for inappropriate ways to deal with anger. Have the group brainstorm ideas for each column. If the group does not suggest it, the leaders should suggest an appropriate nonverbal response to anger, such as throwing a nerf ball.
3. Once the list is complete, allow the children to practice some nonverbal ideas, such as throwing nerf balls at a target.
4. Using the puppets, role-play a quick scenario. Encourage the group to take turns role-playing different scenarios with the leaders. Take turns letting the participants be the recipient of anger (e.g., pretend to be the parent while the leader has a temper tantrum) to see what it feels like being on the receiving end of anger. Discuss alternative ways the leader could have responded better and re-enact the scenario using more appropriate responses.
5. Provide one star for everyone who participated in this discussion. Being treated differently Materials: none Procedure:
1. Discuss how parents might not treat siblings in the same way and that sometimes it may not seem fair for your brother and sister, and other times it may not seem fair for you.
2. Encourage the group to discuss times they felt they were treated differently. a. Some topics may include:
i. Told different things (e.g., in trouble for making mess, for not using manners whereas brother/sister may not be told these things because he/she may not understand).
ii. Told in different ways (e.g., shouted at to go to room for bad behaviour where brother/sister may be asked quietly or his/her behaviour may be ignored completely because the sibling is attention seeking).
iii. Get less attention from parents because the brother/sister may need more help learning or doing their activity.
b. Discuss why the participants think these situations happen.
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3. Wrap-up the discussion by stating that parents may treat siblings different because each child has different needs. Things may seem unfair, but it�s part of an unfair situation where one person has autism and the other doesn�t. We can�t all be treated the same way because we are all different.
a. Discuss the importance of telling parents if they feel things aren�t fair. Encourage participants to discuss different ways to talk to their parents about their feelings.
4. Provide one star for everyone who participated in this discussion. Exploring adaptive equipment Materials: adaptive equipment Procedure:
1. Discuss what the equipment is used for and how it may help the group�s brother/sister. Wrap-up
• Briefly review what activities the group did today and ask what they learned or enjoyed doing.
• Review the number of stars each participant earned and provide him/her with the same amount of tokens to put in his/her container.
Extra activity ideas: Feelings About Our Siblings: Part III Materials: 2 puppets Procedure:
1. Begin the discussion about how sometimes people are scared about talking about their feelings to others and end up bottling it inside. Have the puppets talk about how sometimes they don�t feel like they can share their feelings about their brother/sister because he/she has autism so end up keeping it to themselves. Their mom/dad think that they are okay but really they feel very lonely.
1. Encourage the group to talk about whether anyone has felt that way. Possible discussion questions to consider include:
ii. What do you think would happen if you told your parents some of your feelings?
iii. What would make it easier for you to talk about your feelings to others? iv. Is there anyone you feel safe talking about your feelings to? Why is it easier to
talk to that person? v. Have the group brainstorm ideas of people who might be able to help them
when they feel lonely. 2. Provide one star for everyone who participated in this discussion.
Tree of Support Materials: paper Markers/pencil crayons/crayons Leaf cut-outs (see Appendix B for template)
glue
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Procedure:
1. Ask the group who is special to them. People may include parents, extended relatives, teachers, Girl Guide leaders, coach, neighbour, and so on. The goal is to get them thinking about their support network.
2. Talk about sometimes we all need help, whether it is our sibling, or ourselves, and that is okay. Discuss how there are many people in their life who can provide help to them.
3. Draw the trunk of a tree. 4. Have the group write the names of people who they can turn to for help on the leaf cut-outs
(use one or two names per leaf). Glue the leaves onto their tree. 5. Encourage the group to share their feelings (e.g., happy, sad, angry frustrated) with the
people they have identified on their tree. 6. Provide one star for everyone who participated in this activity.
Pipe Feelings Materials: different colour pipe cleaners Procedure:
1. Have each participant shape a pipe cleaner into something that represents how they feel about his/her brother/sister right now.
2. Encourage the group to discuss how they feel or allow them to present their pipe cleaner, allowing it to speak for them.
Workshop # 6: Siblings Aren�t Always Angels
Purpose: ! To remind siblings that other children face similar difficulties with their brother/sister ! To provide peer support ! To provide strategies and alternatives to deal with difficult situations
Activities: Fingerprint Pictures Materials: paper
washable ink pads crayons
paper towels and soap for cleanup Procedure:
1. Give everyone a piece of paper and have the participants ink their fingers and make pictures on their paper. Encourage them to experiment with their inking.
2. Once completed their picture, have them clean their hands. They can then use crayons to decorate their blotches if they want.
Being a Sibling: The Good and the Bad Materials: 2 puppets
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Procedures:
1. Have the puppets engage in a conversation about how there are good things and bad things about having a brother or sister with autism (e.g., bad things: he screams a lot; good things: we get to play together).
2. Encourage the group to talk about the hardest and best part about having a brother/sister with autism.
3. Provide one star for everyone who participated in this discussion. Fun Game: Copy Cat Materials: None Procedure:
1. Have the participants stand in a circle and tell them to secretly pick one person to imitate. 2. Have everyone spin around once, and then begin to imitate the movement, slightly
exaggerated of the person they have chosen. 3. The movements of the group will likely get larger and everyone will probably end up doing
the same movements without knowing who started it! Sometimes its Tough Being a Brother or Sister!: Part I Materials: Pictures of difficult scenarios (see Appendix C for examples) 2 puppets Procedure:
1. Use the puppets to begin the discussion about how sometimes our brothers and sisters can make us mad. Have one puppet discuss a time when he was mad at his/her brother/sister (e.g., �He messed up my room and I had to clean it up�). It would be important here to have the other puppet or leader say that they get mad at his/her brother/sister too, even though he/she doesn�t have autism � this is a normal part of being in a family!
a. Ask the group if there was a time he/she was mad, annoyed, or upset with their brother/sister (have them raise their hands). Normalize this by showing the group how most people feel this way.
2. Introduce the pictures to the group. Tell a story that corresponds with each picture (e.g., Johnny wanted to play with his toy plane but he found that his brother had broken it).
a. Encourage the group to talk about how they think the character feels and to think of some ways to help the character feel better (try to find as many ways as possible to indicate that there can be many different solutions to difficult situations).
3. Provide one star for everyone who participated in this discussion. Snack Sometimes its Tough Being a Brother or Sister!: Part II Materials: None Procedure:
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1. Introduce the second segment by talking about our own experiences of when our brother or sister made us mad, sad, or even happy. Have the leaders start with an example and share how they coped with the situation.
a. Provide each child an opportunity to share their stories and how they coped. b. Encourage discussion about how the situation could be handled differently.
2. Provide one star for everyone who participated in this discussion. That�s Not Fair! Materials: Deck of cards
Pair of Dice Bag of candy (about 5 pieces per person) Whiteboard/flipsheet + marker
Procedure:
1. Before the session take all but a couple of spades out of the deck of cards and mix the few remaining spades towards the top of the deck.
2. Give each participant five pieces of candy (we used little boxes of smarties) and tell them that they can keep whatever candy they have at the end of the game.
3. Write the following rules on the board for everyone to refer to: a. Dice:
ODD - you must put a piece of candy in the "pot" EVEN - you may take a piece of candy from someone else DOUBLE - you must give a piece of candy to someone else Cards: HEART- you must give a piece of candy to the person on your right CLUB- you must give a piece of candy to the person on your left DIAMOND - you must put a piece of candy in the pot SPADE - you get two pieces of candy from the pot
4. Have everyone take turns rolling the dice and taking one card from the deck. 5. Either set a time limit or end the game when a few people are eliminated or when the pot is
filled with candy. 6. At the end of the game choose one person with the best sportsmanship � yourself (of course,
since this is not a fair game!), so you get to take all the candy left in the middle. 7. The purpose of the game is to make it really unfair, just as life can be. Do not pass out candy
at the end of the game in order to strengthen the effect of how unfair it was. 8. To finish off discuss what the game was like for the kids. Questions can include was the
game fair? Why or why not? How do you feel now? Do you ever feel life is unfair? How do you handle things that seem unfair?
What to Do When Times Are Tough Materials: whiteboard/flipsheet + marker Procedure:
1. Review some of the difficult situations the group discussed previously. Talk about some of the strategies the group thought of that could be used in those situations. Brainstorm other strategies that can be used. The following are some suggested points to review.
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a. Ignoring � especially if he/she is trying to get attention. Give attention when he/she is being good.
b. �If-then� � e.g., if you put my toys back, then I�ll play on the computer with you. c. Redirecting � moving his/her attention to something more productive (e.g., rather
than telling him/her to stop throwing blocks, focus on building something with them instead).
d. If he/she is ignoring you: i. �Break-in� � get his/her attention by doing something he/she likes
ii. Figure out why he/she is ignoring you. 1. Is he/she doing something else? Get him/her to put it down before
talking. 2. Is he/she looking at you? 3. Are there other distractions in the room (e.g., noises)? 4. Did you use his/her name first before talking?
iii. Give choices to encourage him/her to answer (e.g., do you want the blue crayon or the red crayon?).
e. Avoid the situation or remove anything that will create anxiety for the brother/sister. f. Ask mom/dad
2. Discuss how these are some of the things that might help in difficult situations, but they might not always work. They may still get upset, and that�s okay � their feelings are important too.
3. If time permitting, have the group role play a couple of different scenarios in which some of these strategies are used.
4. Create a handout with all of the suggestions outlined to give to the group to take home with them.
5. Provide one star for everyone who participated in this discussion. Exploring adaptive equipment Materials: adaptive equipment Procedure:
1. Discuss what the equipment is used for and how it may help the group�s brother/sister. Wrap-up
• Briefly review what activities the group did today and ask what they learned or enjoyed doing.
• Review the number of stars each participant earned and provide him/her with the same amount of tokens to put in his/her container.
Workshop # 7: Having Fun and Being Proud
Purpose: ! To recognize how special everyone is (including brothers and sisters) ! To highlight positive experiences between siblings ! To highlight personal strengths and talents
Activities:
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Museum of Me Materials: 2 Museums per participant (see Appendix D for template)
Marker/crayons/pencil crayons Procedure:
1. Give each participant two �museums� � one for themselves and for their brother/sister. 2. Have the group decorate their museum. In each section of the museum have the participants
draw something he/she and brother/sister like doing, are good at, and so on. 3. Provide one star for everyone who participated in this activity.
Brothers and Sisters Can Be Fun Materials: whiteboard or flipsheet + marker Procedure:
1. Encourage the group to think about as many good things they can think of having a brother/sister with autism.
a. Include things they enjoy doing with their sibling and how they feel when they are doing something fun together.
b. Also discuss some of the nice things their families do together. (Ensure to lavishly praise all the children when they provide input!)
2. Provide one star for everyone who participated in this activity. Snack Proud of Myself and of My Sibling Materials: star cut-outs (see Appendix E for template)
star stickers marker/crayons/pencil crayons A list of statements (e.g., I have blue eyes; I like playing on the computer) Procedure:
1. Give two stars to each participant, one for self and one for sibling. Give a few minutes for the group to decorate and write their names on one star and their brother/sister�s name on the other.
2. As they decorate, explain to the group that this exercise is to remind them how special they and their brothers/sisters are.
3. Give each participant a pile of star stickers and tell them to put one sticker on their star every time they hear a statement that applies to themselves, and one sticker on their brother/sister�s star every time they hear a statement that applies to their brother/sister.
4. The activity is over once all stars are used up or all statements have been read. 5. Provide one star for everyone who participated in this activity.
Acceptance Game Materials: markers/crayons/pencil crayons
tape paper
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Procedure:
1. Before the session, draw the word �acceptance� in bubble letters. Cut the letters into puzzle-like pieces, ensuring that each piece has only part of one or two letters (i.e., to make it unrecognizable). Make one piece for each participant.
2. If time permits, allow the participants to decorate their piece. 3. Have the group fit all the pieces together (don�t tell them what the word is!). Once together,
tape it on the wall. See if anyone knows what the word spells and what it means. 4. Discuss how there are certain things that we just cannot change, such as the weather outside.
Encourage the group to think of things they know they cannot change. a. Discuss how most of us have learned to accept the things we cannot change, though
some things are easier than others (e.g., rain versus having a sibling with autism). b. Leaders can discuss things they wish they could change and what would happen if
they never accepted the fact they could not have their wish (e.g., I wish it would never rain. If I didn�t get my wish I�d always be so upset whenever it rained.) Then discuss what it would be like if they could learn to accept that they cannot have their wish (e.g., if I could learn to accept the rain, I could learn how to have fun with it and I would not be so unhappy all the time!). Emphasize how they would have missed out on fun opportunities if they never accepted the fact that it rained.
i. Lead into how sometimes we wish we could change things in other people. Encourage the group to discuss things they wish they could change in their brother/sister with autism. Have them talk about what it would be like if they never accepted the things they would like to change, and what it would be like if they could accept those things.
ii. Reiterate the fact that it can be difficult to accept certain things but by doing so can open the door to opportunities they may never have considered.
5. Provide one star for everyone who participated in this activity. Exploring adaptive equipment Materials: adaptive equipment Procedure:
1. Discuss what the equipment is used for and how it may help the group�s brother/sister.
Wrap-up
• Briefly review what activities the group did today and ask what they learned or enjoyed doing.
• Review the number of stars each participant earned and provide him/her with the same amount of tokens to put in his/her container.
• Remind everyone how special they are, compliment them on their hard work, and praise the group for earning stars.
• Remind them that next week will be their last formal meeting.
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Workshop #8: Review and Wrap-up Purpose: ! To review the time the kids have had together ! To review topics covered and consolidate learning ! To say good-bye to the group ! To outline topics for parents for ongoing discussion
Activities: Reintroducing Our Families Materials: white drawing paper
markers/pencil crayons/crayons Procedure:
1. Remind the group that they had drawn a picture of their family doing something fun at the very first session. Ask them to draw another picture of their family doing something fun and the two pictures will be compared.
2. Once the pictures are drawn, show each participant their picture from the first week. Notice any similarities/differences. Encourage them to talk about each picture.
3. Provide one sticker for everyone who participated in this activity. Explaining to Others Materials: none Procedure:
1. Discuss how it can be hard for some people to understand your brother or sister because they may have never heard of autism. It can also be hard because people may not be able to tell that there is anything wrong with him/her.
2. Ask the group if anyone has tried explaining autism to someone and what they said. Ask about some times they may want to explain autism to someone and some things that they could say.
a. The following are some suggestions: i. He can�t talk
ii. All he likes to do is spin the wheels on the car iii. He throws things when he gets mad iv. He was born with it in his brain � he had it when he was a baby v. He has trouble understanding things
vi. He doesn�t like too many people in one place vii. He does not understand other people�s feelings
viii. He can only echo what people say to him 3. Give each participant an opportunity to role-play a scenario in which they practice explaining
autism to others. 4. Provide one star for everyone who participated in this activity.
Fun Game: Sightless Sculpture Materials: blindfold
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Procedure:
1. Ask for three volunteers. One should be designated the model, another the sculptor, and the last clay.
2. Blindfold the sculptor. Once blindfolded, have the model �freeze� in one position in which he/she can hold for a little while. The model can stand, sit, or even lie down. The harder the position, the harder it is for the sculptor!
3. Position the clay next to the model. Lead the sculptor to the model and have him/her feel the model. The sculptor will them �mould� the clay into the same position the sculptor believes the model is in.
4. Ensure everyone has at least one turn being the model, sculptor, or clay. Snack Review Important Topics Materials: white board/flip sheet + marker Procedure:
1. Ask the group some of the things they have learned and write them on the board. Ensure the leaders include topics they felt were important as well.
2. Encourage discussion about what the group remembers of each topic and answer any questions the group may have.
3. Encourage the group to discuss things that they feel it is important for their parents to know. a. Create a �cheat sheet� of the items the kids mention to pass on to parents for follow-
up discussions. Store
Materials: a variety of items for the group to �buy� with their tokens (e.g., skipping
ropes, stuffed animals, frisbees, stickers, dolls, cars, and so on)
Procedure:
1. Give each participant his/her container of tokens. 2. Allow the participants to purchase items from the store using their tokens.
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Appendix A
Autism: An Overview What is Autism?
Leo Kanner was the first to describe and name early infantile autism in 1943 (Cohen,
Sudhalter, Landon-Jimenez, & Keogh, 1993). He described a unique group of children who had failed to develop normal relationships, were upset by changes in their environments, and showed abnormalities in speech and language (Freeman, Cronin, & Candela, 2002). The terms autistic and autism derive from the Greek word autos meaning �self.� The �autism� or self-centeredness in these children was recognized as the primary deficit and the term�s �autism� and �autistic� came to denote their disorder (Freeman et al., 2002). In 1994, the diagnostic term �infantile autism� was replaced by �autistic disorder� [American Psychiatric Association (APA), 1994] implying that the autism phenotype comprises a spectrum of disorders varying in severity, associated symptoms, and causality (Eisenmajer et al., 1996; Miles et al., 2005; Myhr, 1998; Ozonoff, South, & Miller, 2000; Prior et al., 1998; Schopler, 1996).
Autistic Disorder (AD) is a severely incapacitating lifelong developmental disability that
typically appears during the first three years of life (APA, 2000; Lobato, 1990). Autism is more prevalent (1 in 500 individuals) in the pediatric population than cancer, diabetes, spina bifida, and Down syndrome; and strikes males about four times as often as females (Rapin et al., 1999). Its occurrence is generally equal across all cultures, geographic areas, and socio-economic groups (APA; Wolfberg, 1999).
AD is a neuropsychiatric disorder of early childhood (Miles et al., 2005) that impacts the
normal development of the brain in areas of communication, social interaction, and other intellectual abilities (Lobato, 1990). There is vast clinical variability within autism (APA, 2000; Beglinger & Smith, 2001); no two people with autism are the same and may be affected in different ways, manifesting symptoms that range from mild to severe (Miles et al., 2005).
People with autism often exhibit atypical body movements such as hand flapping and body
rocking (APA, 2000). Many children with autism also engage in various forms of challenging behaviours (Dawson & Osterling, 1997), such as seemingly irrational fears or temper tantrums, self-injury, disruption, and aggression. Children with autism often have difficulty attending to social stimuli, imitating others (Dawson & Adams, 1984), and playing appropriately with toys (Jarrod, Boucher, & Smith, 1993). In some cases, children have unusual responses to people or attachments to objects, resistance in routines, and sensitivities in the five senses of sight, hearing, touch, smell, and taste.
The DSM-IV-TR (APA, 2000) system classifies several subtypes of autism within Pervasive
Developmental Disorders (PDD). These include Autistic Disorder, Rett�s Disorder, Childhood Disintegrative Disorder, Asperger�s Disorder, and Pervasive Developmental Disorder-not otherwise specified (PDD-NOS). These conditions, which all appear within the first years of life, are characterized by severe and pervasive impairment in the development of reciprocal social interaction, verbal or nonverbal communication, imaginative activities, or the presence of restricted, repetitive, and stereotyped patterns of behaviour, interest, and activities. For the diagnosis of AD, the
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focus of the present study, all of the above features must be present. That is, the established criteria to be met for a specific diagnosis of AD, as outlined by the DSM-IV-TR (APA, 2000), includes:
! Impairment in social interactions, such as impaired use of nonverbal behaviours, failure to
develop peer relationships, or lack of social reciprocity. ! Impairment in communication, such as lack of spoken language development, difficulty
initiating or sustaining conversations, or lack of initiative play. ! Restricted, repetitive, or stereotypical patterns of behaviours or interests. ! Delays or abnormal functioning with onset prior to 3 years in at least of 1 of these areas;
social interaction, language as used in social communication, or symbolic or imaginary play. ! The disturbance is not better accounted for by a diagnosis of Rett�s disorder or Childhood
Disintegrative Disorder AD is a clinical diagnosis and diagnostic evaluations are based on the presence of specific behaviours indicated by observation and through parental consultation (Freeman et al., 2002). What Causes Autism?
Currently, there is no known etiology of autism and therefore is no cure for it. Current research suggests that there is one or more abnormalities in the brain linked to such causal factors as viral infections, complications at birth, metabolic abnormalities, genetic conditions, and possible environmental toxins (Baron-Cohen & Bolton, 1993; National research Council, 2001). Although there is no cure to overcome the disability, treatment is available and generally includes interventions that target specific areas of need, such as social skills, language acquisition, nonverbal communication, and behaviour management (National Research Council, 2001).
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Appendix B
The Effects of Having a Sibling with Autism Relatively few studies have evaluated the effects of siblings of children with autism. The
findings of studies that have examined the effects of siblings of children with autism have indicated mixed results. For example, some studies have indicated that non-disabled siblings of children with autism are at increased risk for externalizing and internalizing adjustment problems than siblings of children with other disabilities and siblings of normally developing children (Bagenholm & Gillberg 1991; Rodrigue, Geffken, & Morgan, 1993). Results indicated greater incidences of depression, anxiety, loneliness, and problems with peers (Evans, Jones, & Mansell, 2001; Riebschleger, 1991; Rodrigue et al., 1993), and higher levels of attention and conduct problems (Rodrigue et al.). In contrast, other studies have reported that siblings of children with autism are not at a greater risk for adjustment difficulties or loneliness (Kaminsky & Dewey, 2002) and do not show decreased levels of social competence (Rodrigue et al.).
Nonetheless, the majority of researchers suggested that many children are adversely affected
by the presence of a sibling with disabilities in general, including autism (Banks et al., 2001; Burke & Cigno, 2000; Burke & Montgomery, 2000; Dodd, 2004; Evans et al., 2001; Fisman, Wolf, Ellison, Gillis, Freeman, Szatmari, 2005; Foster et al., 2001; Frank, 1996; Koegel & LaZebnik, 2004; Naylor & Prescott, 2004; Powers, 2000; Richman, 2001; Richmond, 2004). Indeed, research has shown that siblings tend to share a number of special concerns regarding the adverse effects of having a sibling with a disability, no matter what type of disability their brother or sister has (Harris, 1993; Powell & Ogle, 1985; Roeyers, & Mycke, 1995). Adverse effects include reduced parental attention, differential treatment, and restrictions on extracurricular and family activities. Each of these will be reviewed in the remainder of this section. Reduced Parental Attention
A point repeated throughout the literature is that siblings of children with disabilities receive less attention from their parents because a great deal of parental time is spent caring for the disabled child (Burke & Montgomery, 2000; Dodd, 2004; McHale & Gamble, 1989; Naylor & Prescott, 2004; Wolf et al., 1998). This is particularly true with siblings of autism, as their brothers and sisters often have a very full schedule, with programs that can use up their parent�s free time (Harris & Glasberg, 2003; Koegel & LaZebnik, 2004). Further, children with autism may need regular redirection to engage in typical activities, making it difficult for parents to give their other children as much attention as they�d like to.
Siblings have reported that they are not as close to their mothers as they were before their
sibling was born, and that they do not have enough of their parent�s attention (Banks et al., 2001; Naylor & Prescott, 2004). Reduced parental attention may lead to feelings of anger, isolation, low self-esteem, incompetence, resentment, and perceived neglect by the parents (Dyson, 1989; McHale & Pawletko, 1992; Meyer & Vadasy, 1994; Powell & Gallagher, 1993; Wolf et al., 1998).
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Differential Treatment Tension also arises over perceived differential treatment by parents (Furman, 1993). For
example, if the child with autism displays disruptive or challenging behaviours and is not reprimanded, siblings may feel perplexed or resentful (Banks et al., 2001), particularly when their parents are less tolerant of their own �misbehaviour� (Foster et al., 2001). Candies may be presented to the child with autism frequently, whereas snacks may not be as easily accessible to siblings (Richmond, 2004). This may cause siblings to feel like they are �missing out� because they did not receive the perks their brother or sister did receive. During therapy, they may hear the child with autism being praised repeatedly and feel jealous (Frank, 1996; Richman, 2001). Siblings may also be under increased pressure to achieve academically or in sports, in some way compensating for their sibling�s disability (Naylor & Prescott, 2004). Siblings may resent that their brother or sister is �playing� when they themselves must work so hard (Frank, 1996; Michaelis, 1980). They may feel their accomplishments have been overlooked, whereas every achievement of their sibling is treated with excitement (Seligman & Darling, 1989). Feeling ignored and unappreciated for one�s achievements may leave lifelong scars on the non-disabled siblings (Seligman & Darling, 1997).
Differential treatment may also affect siblings� behavioural and emotional adjustment (Jouriles, Norwood, McDonald, Vincent, & Mahoney, 1996; Kerig, 1996; Margolin, Christensen, & John, 1996; Nixon & Cummings, 1999; O�Brien, Margolin, & Krueger, 1991). Their ability to cope may be complicated with conflicting emotions, such as rejection, embarrassment, or neglect (Powers, 2000). Consequently, they may attempt to hide their feelings or act them out inappropriately (Powers).
Differential treatment may also affect the quality of sibling relationships (Dunn & Stocker,
1989), where siblings may spend less time with each other and may initiate fewer interactions. In fact, the normal ambivalence of sibling rivalry might be exacerbated when parental energy and resources flows to the disabled member of the family (Cole & Cole, 1987). Restrictions on Extracurricular Activities and Family Activities
Parents have discussed the difficulty in coordinating family routines in order to facilitate
opportunities for their non-disabled child to participate in social or sport activities after school (Burke & Montgomery, 2000). Generally, the child is unable to participate in such extracurricular activities (Banks et al., 2001; Burke & Montgomery; Dodd, 2004; Dyson, 1989; Koegel & LaZebnik, 2004; Lobato, 1990; McHale & Gamble, 1989; Naylor & Prescott, 2004; Wolf et al., 1998), typically because it is too difficult for parents to arrange for it. Missing these activities can be detrimental because they are so important in the development of cognitive, social, and affective competencies in children (McHale & Gamble).
Siblings are also aware of the restrictions on their extracurricular activities, as well as family
activities and social occasions (Burke & Montgomery, 2000; Dodd, 2004). For example, social outings may be cancelled due to supervision problems, and activities at school may exclude one parent because the other parent needs to take care of the disabled sibling. Most non-disabled siblings can recount incidents of vacations cut short or long-awaited trips halted abruptly because of their brother or sister�s disruptive behaviours (Koegel & LaZebnik, 2004). In general, siblings �miss out�
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on certain events and activities because the whole family is unable to take part (Burke & Cigno, 1996). Other Difficulties
Parents have outlined a number of other adverse effects their child with special needs has on
their non-disabled child, such as problems of noise (affecting siblings� sleep and homework), embarrassment in having friends over, inability to meet with friends after school, and lost or broken possessions (Burke & Montgomery, 2000; Dodd, 2004). In addition to these difficulties, siblings report difficulties sustaining friendships; being bullied; not having much time away from their disabled sibling; and embarrassment by their sibling�s behaviour, such as excessive self-stimulation (Banks et al., 2001; Dodd; Koegel & LaZebnik, 2004; Lobato, 1990; Naylor & Prescott, 2004; Wolf et al., 1998). Embarrassment by their sibling�s behaviour is particularly salient for siblings of children with autism (Roeyers, & Mycke, 1995). Siblings may also feel depressed because their disabled sibling cannot do all the activities they can do (Naylor & Prescott) and are more likely to substitute their desired activities for less desired activities to facilitate opportunities that are more achievable for their sibling (Evans et al., 2001).
As a result of these difficulties, non-disabled siblings are more susceptible to feelings of guilt, resentment, loneliness, jealousy, and embarrassment towards their sibling, and are at risk of developing psychological problems and behavioural difficulties (Evans et al., 2001; Riebschleger, 1991). This is particularly true in families with a disabled child who generates extremely high levels of distress, as with the child with autism (Fisman et al., 1996). In addition, siblings of children with autism may have difficulty understanding autism and why his or her brother or sister displays certain behaviours (Howlin & Yates, 1990; Richman, 2001). Benefits of Having a Sibling with a Disability
It is important to note that, despite the overwhelming number of adverse affects resulting
from having a sibling with special needs, a number of sources have documented several benefits as well (Eisenberg et al., 1998; Powell & Gallager, 1993; Seligman & Darling, 1989). These include an increased understanding of disabilities; closer family relationships; enhanced maturity; and greater sensitivity, sharing, empathy, insight, compassion, appreciation, and independence (Banks et al., 2001).
Many siblings take pride in the achievements of their brothers or sisters with autism, such as
learning to speak or learning to play cooperatively (Harris & Glasberg, 2003). Siblings who can share in such achievements tend to feel closer to their siblings because they have overcome many challenges together (Harris & Glasberg). Siblings of children with autism have also been shown to express greater admiration for their brother or sister and reported less fighting and competition than siblings of normally developing children (Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004).
Although some siblings if children with autism demonstrate greater attention seeking, it has
been hypothesized that, as they grow older, they learn to adapt better than siblings of children with no disabilities, thereby contributing to a more positive self-concept and better social skills (Verté et al., 2003). As siblings grow older, they demonstrate an enhanced empathic ability towards their sibling (Pilowsky et al., 2004). Adult siblings have also reported greater patience and tolerance they
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might not have otherwise learned had it not been for their brother or sister (Harris & Glasberg, 2003). Some siblings are so positively influenced by their experience growing up with a brother or sister with autism that they pursue careers in the helping profession (Harris & Glasberg).
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Appendix C
Meeting the Needs of Siblings of Children with Autism
The role of support groups has been reported throughout the literature to have a positive effect on a number of different populations, such as on children�s ability to cope with stressful events (Printz, Shermis, & Webb, 1999), on adaptive behaviour in school-aged children (Jackson & Warren, 2000), and on the psychological adjustment of physically abused children (Barrera, Fleming, & Khan, 2004; Ezzell, Swenson, & Brondino, 2000). Support groups for siblings of children with disabilities have also shown to have positive outcomes (Dodd, 2004; Evans et al., 2001; Lobato, 1990; Naylor & Prescott, 2004). In fact, the literature has consistently indicated the immediate benefits and satisfaction of participating in sibling support groups, regardless of the sibling�s disability (Dodd; Dyson, 1989; Evans et al., 2001; Lobato; Naylor & Prescott). Even small-scale pursuits have been shown to be worthwhile in terms of improving children�s quality of life and providing support for parents (Dodd).
The dominant advantage of sibling support groups is that they can address a number of
siblings� needs and concerns, such as the need for factual information about disabilities (Burke & Cigno, 2000) and the need for contact and emotional support from peers in similar situations (Dodd, 2004; Frank, 1996; Lobato, 1990). This peer support is particularly important for siblings of children with autism, as they typically report more feelings of shame and embarrassment of their brother or sister than siblings of children with other disabilities (Roeyers, & Mycke, 1995). Therefore, the support of peers in a similar situation may be very welcome. Each of the needs listed here are discussed next, followed by a summary of other related benefits of sibling support group membership found in the literature. The Need for Information
Many brothers and sisters have indicated they need help understanding their siblings�
disabilities and would like to learn more about how to get along with them, how to ignore their maladaptive behaviours, and how to talk and play with them (Dyson, 1989). It is crucial that siblings are given such information (Dodd, 2004) because misinformation, lack of knowledge, and misunderstanding may contribute to their feelings of guilt, fear, anger, responsibility, and confusion (Powell & Gallagher, 1993; Seligman & Darling, 1989). Limited or poor information can also be damaging because children typically create their own ideas (Richman, 2001) and fill in missing pieces to help manage their feelings (Frank, 1996). For example, siblings of a child with autism may misconstrue their brother or sister�s behaviours because he or she does not like them, or that their parents give their disabled sibling more attention because they love him or her more. Siblings may also be confused about such things as how they should respond to discomforting feelings (e.g., anger and guilt), how to communicate to family and friends about the disability, or how to relate effectively to their sibling (Seligman & Darling, 1997; Wasserman, 1983). Some siblings may also feel guilty that they caused the disability, which can lead to withdrawal, depression, suicidal thoughts, and self-destructive and aggressive behaviour (Rolland, 1994). Other siblings may be concerned that the disability is contagious, believing that if their brother or sister got the disability, so could they (Rolland, 1994; Wasserman). Rolland noted
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A sibling�s illness shatters children�s myths that serious health problems and death happen when a person is old; they lose sense of immunity. Siblings often develop fears or phobias that even the smallest symptoms may be serious. (p. 220)
Teaching non-disabled siblings about their brother or sister�s disability, about why treatment
is necessary, and about why parents need to be involved, may help dissipate harmful misconceptions and provide knowledge the children need in order to cope with feelings and situations that may arise in the family or with peers. It also allows them to gain a better understanding of the disability, its associated behaviours, and their own situation with less fear or confusion (Lobato, 1990; Richman, 2001; Seligman & Darling, 1997). An increased understanding will also minimize the negative impact differential treatment can have because non-disabled siblings can perceive and understand the reasons behind different parental expectations (McHale & Pawtelko, 1992). Explaining the cognitive limitations of their brother or sister, the educational methods used in therapy, and the skills that are being taught will help siblings be supportive rather than critical and resentful (Seligman & Darling).
It is obvious that an increased knowledge of the sibling�s disability helps minimize a variety
of problems, as outlined above, but many parents find it difficult to know when non-disabled siblings are ready to know about a child�s disability (Lobato, 1990). Furthermore, some are reluctant or unsure of what to communicate about the disability, or may try to protect their children by not talking to them about certain aspects of the disability and treatment (Foster et al., 2001). This results in non-disabled siblings� having a limited understanding of their brother or sister�s condition (Seligman & Darling, 1997). Sibling support groups would be advantageous here, because they provide a rich opportunity for information giving (Beckman, Newcomb, Frank, Brown, & Filer, 1993; Lobato). Furthermore, they allow the children to hear others their own age discuss the disability in terms they can understand and relate to (Lobato). Participating in sibling support groups increases siblings� knowledge of, and comfort with, their brother or sister�s disability and associated challenging behaviours (Dodd, 2004; Dyson, 1989). Consequently, parents have reported that it is easier to discuss their child�s disability at home because their kids would talk about what they learned at group, indicating their comfort in discussing the issue (Lobato). The Need for Peer Support
Siblings benefit not only from the content of the group, but also from being a part of a
shared experience with other individuals who understand each other (Frank, 1996). Support groups provide siblings social support that is important for their well-being and development. Barrera et al. (2004) defined social support as
� a concept that implies a relationship with others that may result in feelings of attachment, security, being loved, being part of a group, reassurance of self-worth, availability of informational, emotional, and material help, and reliable alliance with others. (p. 104)
Support groups give siblings an opportunity to meet with other children in similar situations
and share their feelings and experiences. They can learn that their family is not the only unique one and allows them to speak their mind unconditionally and explain the nature of their own family in a safe environment (Lobato, 1990; Naylor & Prescott, 2004).
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Researchers have begun to recognize that support from other families is one of the most important forms of support available to families of young children with disabilities (Frank, Newcomb, & Beckman, 1996). In fact, siblings of children with disabilities who receive low levels of social support have been found to be at risk for psychological maladjustment (Barrera et al., 2004). A group of peers that share their particular life circumstance has been shown to play the most important role in the psychological adjustment in children (Varni & Katz, 1997) and has powerful healing powers (Seligman & Darling, 1997). Not only does it encourage siblings to have interests and friends outside of the family (Dodd, 2004), it also helps increase their self-esteem and coping strategies, particularly with negative feelings, such as guilt and anger (Dodd; Lobato, 1990).
Siblings themselves have reported that support groups have helped them deal with their
feelings related to their brother or sister�s disability (Frank, 1996; Lobato, 1990; Powell & Ogle, 1985). Indeed, adult siblings often state that it would have been helpful to meet other siblings when they were young (Lobato). Many children feel so guilty about the anger and frustration their sibling provokes in them that they suppress their emotions completely (Powers, 2000). It is therefore important to allow them to express their negative emotions, such as hate, anger, fear, and guilt. Sharing these feelings with others in a similar position helps normalize their feelings and experiences and helps them understand that they are not alone (Dreier & Lewis, 1991; Nixon & Cummings, 1999; Richman, 2001). Research has shown that children who have the opportunity to be around others who know how they feel, without explanation, can be very positive (Burke & Montgomery, 2001). Shared experiences create a safe environment where members feel free to express their feelings without worrying about how others will react (Dreier & Lewis). This shared experience provides a sense of belonging and reduces feelings of isolation (Beckman et al., 1993; Shulman, 1992). Other Benefits of Support Groups for Siblings
Support groups have been found to help siblings overcome frustrations, increase their self-
expression, encourage activities, decrease the occurrence of depression (Beckman et al., 1993), decrease their sense of isolation (Naylor & Prescott, 2004), and increase their sense of acceptance and identification (Beckman et al.). Other benefits reported in the literature include an increased involvement and improved relationships between siblings, increased independence, increased appreciation for the strengths of their disabled sibling, and a greater empathy for people with disabilities in general (Dodd, 2004; Dyson, 1989; Evans et al., 2001). Parents also reported an improvement in family relations (Evans et al.). Siblings felt the groups helped them make new friends, gave them more privacy, gave them a chance to be with other children who understood them, helped them express their own feelings and views about disabilities and difficulties at home, increased their coping strategies within the family situation, and increased their self-esteem (Dyson; Naylor and Prescott). The children were able �to steer the group towards a more therapeutic focus, clearly acknowledging that an expression of feelings about one�s situation helps one to deal with it� (Naylor & Prescott, p. 204).
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Appendix D
Developmental Considerations The following provides a brief overview of the preoperational and concrete operational stages of cognitive development. These stages are highlighted because they are the developmental stages of the target population for this manual. Preoperational Stage
In this stage, children base their ideas directly on their own experience, rather than using
logic to formulate their thoughts (Harris & Glasberg, 2000). Concepts are defined by already existing knowledge the child has. In addition, different experiences may not be tied together. That is, preoperational thought tends to be focused on one salient feature of an experience at a time (Broderick & Blewitt, 2006). Because children in this stage are unable to think about more than one thing at a time, they are unable to discover relationships among facts and may draw conclusions that seem quite illogical to adults (Broderick & Blewitt).
Using Piaget�s developmental framework, Bibace and Walsh (1980) investigated the
developmental progression of understanding illness-related concepts such as health, colds, heart attacks, and germs. They found that children in the preoperational stage relied on direct experience (i.e., what the child heard or saw), rather than logic, when thinking about illness. Within this phase the investigators identified three subcategories of reasoning about illness. The first subcategory, incomprehension, included children who did not know the answer or who provided nonsensical answers. The second subcategory, phenomenism, included answers from children who focused on one specific symptom of the illness (e.g., a cold is when you have to take yucky medicine). The cause of the illness is viewed as an external occurrence that is spatially and/or temporally remote, but children at this stage are unable to explain how these occurrences cause the illness. For example, a child may state that people get colds from the grass and, when asked about how this happens, would state �because it does.� The third subcategory, contagion, included answers in which children believed the illness and cure are transmitted, almost magically, from objects or people in close proximity to, but not necessarily touching, the person (e.g., a cold is when you sit by someone who is sick).
Concrete Operational Stage
In this stage, logical thinking emerges and children begin to link varied experiences together when defining concepts (Harris & Glasberg, 2000). Children�s thinking becomes more efficient and they are able to begin taking multiple pieces of information into account simultaneously and begin to form relationships among their observations (Broderick & Blewitt, 2006). Children in this stage can begin to make relationships among their observations.
Bibace and Walsh (1980) found that children�s reasoning in the concrete operational stage is
less limited to personal experience and more logical. Within this phase they identified two subcategories of reasoning about illness. The first subcategory, contamination, is characterized by children�s beliefs that illnesses are caused by an external occurrence (e.g., person, object, or action) that is �bad� for the body. Illness is caused by something physically contacting the person (e.g.,
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touching), or through physically engaging in a harmful action (e.g., not zipping up one�s coat in the winter and letting the cold touch one�s belly). Both illness and cure are transmitted through physical contact, which is under the control of one�s own behaviour. Children in this stage are able to consider more that one symptom at a time (e.g., when you have a cold, you have a runny nose, feel sleepy, and cough). The second subcategory, internalization, is characterized by the belief that illness and cures come from inside the body, though the cause may be external. That is, illness is believed to somehow enter the body (e.g., by swallowing or inhaling) to make the person sick (e.g., you get the cold when someone sneezes on your snack and you eat it).
Because autism is a developmental disability rather than an illness, and is associated with
less tangible physical symptoms than a cold, Glasberg (2000) examined the extent the developmental stages described Bibace and Walsh�s (1980) study apply to children�s understanding of autism. She found that, although children�s reasoning progressed through developmental stages, it developed at a delayed rate compared to norms for illness concepts, as in the above study. Specifically, she found that all participants (5 through 17-year-olds) demonstrated reasoning within the preoperational stage of cognitive development when discussing concepts relevant to the definition and etiology of autism. For example, when asked about how children get autism, children in the preoperational stage (i.e., between the ages of 5 and 6 years old) fell within Bibace and Walsh�s �phenomenism� substage. Children relied heavily on their own direct observations and were unable to relate one observation to another. In addition, children in this stage focused on one concrete and observable symptom (e.g., language delay). Although children between the ages of 7 and 10 years old were expected to advance past the preoperational level of reasoning, they continued to demonstrate preoperational reasoning in conceptualizing autism, falling within Bibace and Walsh�s �contagion� substage.
Piaget (1929) posited that children demonstrate delayed understanding of emotionally laden
concepts. Glasberg (2000) hypothesized that the delay may stem from the nature of autism because it is more abstract than many physical illnesses, therefore making it more difficult to understand.
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Appendix E
Fun Activity Ideas Animal Hunt Materials: Slips of paper with animals written on them Procedure:
1. On each slip of paper write the name of an animal. Ensure each animal is written twice. 2. Hand out a slip of paper to each participant, telling them not to share what their animal is
with others. 3. Explain to the group that, when the lights go out, they are to make the sound of the animal
that is on their slip of paper. They are then to find their animal partner. Only animal sounds are allowed � no talking!
4. Once their partner is found tell them to hold hands, be quiet, and wait until the rest of the group has found their partners.
Chocolate Madness Materials: dice Slab of chocolate Knife and fork Items of clothing (e.g., hat, scarf, gloves) Procedure:
1. Place the chocolate and items of clothing on a chair on one end of the room. 2. Have each participant sit on a chair at the other end of the room. 3. Take turns rolling the dice. If someone rolls a six he/she runs to the chair, puts on all the
clothes, and cut the chocolate using the knife and fork. At the same time others are still taking their turns rolling their dice, and whoever rolls a six replaces the person cutting the chocolate (they never know when their turn is up!).
4. Players can keep any chocolate they cut. Clothing Race Materials: 2 sets of adult sized clothes (e.g., shits, pants, suspenders, ties, hats, etc.) Procedure:
1. Split the group into two teams and line them up on opposite sides of the room, facing each other.
2. Put each teams shoes in front of their opponent�s line. 3. The first person of the team gets dressed up in their teams� clothes, runs to their piles of
shoes, undresses, finds their own shoes, runs back to their line and tags the next person. 4. The next person then runs to the piles of shoes (because that is where the clothes are now),
puts on the clothes, finds their own shoes, runs back to their line up, and tags the next person. 5. Each team continues this until everyone has had a turn.
Height Line-up Materials: painter�s tape
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Procedure:
1. Using the painter�s tape, put two lines one the floor, creating a narrow row. 2. Have the group stand in between the two lines. 3. Tell the group to put themselves in height order without anyone crossing over the line.
Music Mania Materials: CD with music the group likes Tissue/construction paper Stickers Paint Markers/crayons/pencil crayons Glue Glitter Variety of craft supplies (as suggested below) Procedure:
1. Each participant can make his or her own instrument. Some examples include: a. Microphone: glue a Styrofoam ball on top of a toilet paper roll b. Guitar: Kleenex box with elastics for strings (base of guitar); paper towel roll for arm
of guitar c. Drums: old plastic containers d. Tambourine: Punch holes around the edges of a Styrofoam plate and tie ribbon with
bells through holes e. Maracas: put rice inside a toilet paper roll, cover ends, and tie with elastics
Puzzle Picture Frames Materials: Old picture frames Puzzle pieces Glue Procedure:
1. Give each participant a picture frame and allow him or her to decorate using puzzle pieces.
Tie-Dye Shoelaces Materials: white cotton shoelaces (one pair per child)
fabric paint - various colours plastic bowls Popsicle sticks or plastic spoons for mixing plastic bags
Procedure:
1. Tie knots one inch apart along each shoelace. 2. Mix 1 tbsp of water and 1tblsp of fabric paint in each bowl, mixing well. 3. Dip each knot in the paint for a few seconds (the longer you leave it the darker it will be).
The dye will �bleed� along the lace. Looks best with at least two colours used.
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4. Place laces on plastic bags to dry. 5. Unknot the laces once they are completely dry (may need to wait until the next session).
Puffy Painting Masterpieces Materials: poster board Paint Shaving cream Elmers glue Paint brushes Procedure:
1. Mix paint, shaving cream, and glue together. 2. Allow the group to paint pictures. As the texture dries it puffs up and hardens.
Name Search Materials: create a word search of the names of the participants (and siblings if need more
names) pencils Procedure:
1. Give each participant a word search to complete.
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Appendix F
Snack Ideas ! Tortilla pinwheels with cream cheese
o Spread each tortilla with cream cheese, roll, and cut into one inch pieces ! Pizza Bagels
o Spread tomato sauce onto mini bagels and top with favourite toppings (e.g., cheese, pepperoni, etc.). Cook in the microwave until cheese is melted.
! Subs o Fill sub buns with favourite fillings (e.g., cheese, ham, etc.)
! Veggies and dip ! Fruit tray (with chocolate dip) ! Fruit and cheese kabobs
o Alternate fruit (e.g., cantaloupe, apple) with pieces of cheese on a skewer ! Cheese and crackers ! Granola bars ! Fruit leather ! Popcorn ! Decorate cookies with frosting and sprinkles ! Decorate cupcakes with premade frosting and different toppings (sprinkles, gummi bears,
etc.) ! Trail mix
o Provide a variety of ingredients (e.g., pretzels, m&m�s, yogurt covered raisins, dried fruit, etc.) to mix together in individual baggies
! Juice boxes ! Instant pudding done in a shaker jar, poured into an ice-cream cone - topped with cool whip
& sprinkles ! Dirt cake
o Mix chocolate pudding with crushed Oreos and top with gummy worms ! Premade crepes and cut up fruit (strawberries, kiwi and blueberries, etc.) mixed with cool
whip
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Appendix G
Face Tag Template
Face Tags Choose a face that best matches your own. Colour your
face, hair, and any details that make you special!
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Appendix H
Leaf Template
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Appendix I
Difficult Scenarios
Example 1 Example story: Mike�s sister Katherine broke Mike�s piggy bank. When Mike got upset and told his dad, his dad defended Katherine (e.g., don�t get mad at Katherine, she has autism and doesn�t know any better).
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Example 2
Example story: Adam�s brother Mark broke Adam�s favourite toys and thought it was funny.
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Example 3
Example story: Sally�s brother Robert played in Sally�s room and made a big mess. Even though she didn�t make the mess, Sally was expected to clean it all up and Robert didn�t have to do anything.
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Appendix J
Museum of Me Template
Museum of Me
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Appendix K
Star Template
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CHAPTER V
Results
Participants were asked to respond to open-ended questions about the sibling support group.
Responses were grouped together to reveal the parents� perceptions regarding having their children
participate in the sibling support group. Based on the questions asked, four key themes emerged
from the interview data: positive aspects of the group, benefits of the group, areas of improvement,
and future considerations for subsequent groups. Illustrative excerpts related to each of the themes
that emerged are presented. In order to ensure participant anonymity, each parent is identified
numerically (i.e., parent 1, parent 2, and parent 3).
Positive Aspects of the Group
Overall, both families reported that their children enjoyed the sibling support group. Parent 1
stated that his daughter ��loved it. She looked forward to it�and is sad that it is over. She�d be
happy to go every day.� Parent 2 agreed that her daughter ��loved it. She loved everything. She
looked forward to the group every week.�
All the parents indicated that they also enjoyed the group, commenting that it �was a great
idea.� They recognized the fact that siblings of children with autism have their own unique needs
and that the support group was beneficial in addressing those needs. For example, parent 1 stated, �I
commend you for taking it on because �the siblings� they fall through the cracks.� All the parents
also expressed interest in having their children participate in the groups again, as demonstrated by
parent 1�s comment, �it is a great program, something we will always be interested in.�
In addition to commenting that they enjoyed the group, all of the parents highlighted a
number of positive aspects of the group, as outlined below. Specifically, the safe environment, the
group composition, and their children�s favourite activities were discussed.
Safe Environment
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Both families commented that their children felt confident in sharing their feelings and
experiences in the group, agreeing that the group fostered a safe environment in which to do so.
Parent 2 stated, �Yes, she felt safe. She liked talking in the group.� Although a few of the discussion
activities focused on negative feelings the children may have towards their siblings and how it can
be difficult to have a sibling with autism, neither family indicated that their child was upset at any
time during the group. All parents agreed that their children enjoyed all of the discussions and felt
comfortable participating.
Group Composition
Both families made a point that they were glad that the group was composed of all girls.
Parent 3 stated that having all girls in the group might have contributed to the fact that the group was
a safe place to share feelings and that her daughter was comfortable participating in the group.
Parent 1 mentioned that having boys would have made the group a very different experience and was
not sure it would have been as good as it is, particularly because most of the activities seemed to
cater to girls. That is, he was not sure boys would have enjoyed the craft activities, for example, and
may not have participated as much in the discussions as the girls had.
Favourite Activities
Overall, the parents believed that the group content was good and covered issues they felt
were important. When talking about what their children�s favourite activities were, both families
agreed that their children looked forward to receiving tokens for participating in the group and
became increasingly excited as the weeks progressed to go �shopping� with their tokens. Parent 3
exclaimed that her daughter ��liked the tokens for being good. She�s been pretty excited about that
for the last three weeks.� Parent 1 went on to say that, in addition to the tokens, his daughter
enjoyed doing the crafts and summarized, �It�s like you catered it for her because of the things you
did is what she likes to do, you know, the crafts, the talking, the shopping.� Parent 2 commented
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that her daughter enjoyed every activity she participated in, whether it was a discussion, craft, or
game.
In addition to favourite activities, there was one major discussion topic that all the parents
felt stood out for their children: same and different. Both families agreed that their children talked
the most about same and different, particularly about similarities and differences between their
sibling and themselves. As parent 3 put it, �[My daughter] was on that for a while, why they are the
same and what�s different.� Parent 2 concurred, stating that her daughter �talked a lot about same
and different; what was different between her and her sister.� In fact, parent 2 mentioned repeatedly
throughout the interview that her daughter talked a lot about same and different: �Well, that, the
same different, she talked about that a lot�like I said, the thing she talked about the most was the
same and different.�
Benefits of the Group
In addition to the positive aspects of the group, all of the parents outlined a number of
benefits the group had. Benefits are discussed next and included increased understanding of autism,
increased ability to cope with difficult situations, facilitated communication within the family,
enhanced relationships between siblings, and peer support.
Increased Understanding of Autism
Overall, both families indicated that, by participating in the sibling support group, their
children increased their understanding of autism. In particular, the support group helped teach the
children more about the specifics of autism and how it relates to their siblings. Indeed, all parents
discussed how they were only able to provide vague information about autism to their children, so
the group was beneficial in providing more specific information in a way that the children could
understand. This point is illustrated by parent 1�s comment that the group provided his daughter with
�more specifics�Before it was just always generalizations and just sort of vagueness about the
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whole condition, where I think the program helped her focus more on specifics rather than just
generalizations, which I think is a benefit.�
All the parents agreed that the group went beyond simply providing information about autism
by helping the children understand how autism relates to their brothers and sisters. For example,
parent 2 mentioned that, with an increased understanding of autism, her daughter is better able to
understand her sister and associated behaviours and has become more accepting of �how [her sister]
is and why she behaves the way she does.� Parent 3 went on saying, �She�s like trying, she�s like
relating the word with what it means for [her brother]. It�s good.�
Having information about autism also helped clear up misconceptions the children may have
had about their siblings and autism. For example, before participating in the group one child had
focused on trying to cure her sibling�s autism. Parent 2 talked about how, since her daughter has
attended the group, her trying to cure the autism has �backed off. Yeah. Like I said, she�s more
accepting now�she hasn�t been asking much more about that.�
Beneficial having a professional explain autism. Both families stated that they had difficulty
explaining autism to their child and agreed that having someone knowledgeable in autism who could
explain it to the children�s developmental level facilitated the children�s increased understanding of
autism. As parent 1 put it, �Parents don�t know well enough to explain the specifics about the
condition. For us it�s not autism, it�s our life.� He went on to say that having a professional talk
about autism was the greatest benefit of the support group:
That�s what I think is the biggest benefit is to your program � as a professional in the field
explaining, you know, getting more clinical about the condition� I think that having a
professional in the field is better skilled at being able to be more specific about, you know,
what the condition is�I have a hard time defining it to myself let alone explaining it to an 8
year old.
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Parent 2 indicated:
[We] didn�t know what language to talk to her about it�[we] were sometimes not hitting the
mark when we�d explain it, so I think it�s a good thing that you thought of [the group]
because, like I say, we�re not hitting the mark all the time with it.
She continued on that her daughter is �more knowledgeable in her level�I think it�s like more in her
language.�
Increased ability to cope with difficult situations. Parent 2 noted that, with an increased
understanding of autism, her daughter has been better able to cope with her sibling�s maladaptive
behaviours. Indeed, both families believed that their children were less likely to take their sibling�s
maladaptive behaviour personally. Parent 1 expressed, �The thing�that completes the whole thing
is knowing that there is a condition there and that [her brother is] not choosing to be that way� (e.g.,
choosing to be mean). Parent 2 agreed, stating that her daughter:
Understands better� why [her sister] behaves the way she does. She knows that it�s the
autism. She knows that [her sister] doesn�t do things to be mean�she�s understanding more,
like why [her sister] sometimes doesn�t listen to her�or ignores her.
Parent 2 also mentioned that, since participating in the group, her child was better able to manage
difficult behaviours appropriately. She explained, �I�ve noticed since the group that if [her sister] is
not listening she says, �turn around, look at me.� She never used to do that. Before she�d be like,
�why isn�t [she] looking at me?��
The parents also shared stories demonstrating that, with more information, their children
have been better able to cope with differential treatment. Indeed, both families talked about how
their typically developing child had difficulties with differential treatment at one time or another.
Parent 1 reflected, �I think that in the beginning we were so focused on trying to get [our son]
help�we actually had a hard time at some points� because, as he stated, his daughter would
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question, �do they love [my brother] more than me?� He added, �It was difficult because she didn�t
know what was going on.� Parent 2 commented that, since participating in the group, her daughter is
better able to deal with this differential treatment because she has a better understanding of why her
sister sometimes gets more attention than her and is therefore less likely to take it personally. She
exclaimed:
I think she�s a little bit more understanding of why I am always, we�re doing more for [her
sister]�whereas before she would like always be like sitting there, you know, wanting the
attention. She�s kind of seemed to realize like we�re not doing it to be mean to her.
Facilitated Communication
Another noted benefit of the support group was that it facilitated communication between the
children and their parents. Parent 2 observed:
Yeah. Yes. [We talked] more about [her sister], about the school, and why [her sister] has to
do some things, why she acts sometimes the way she does�That has opened up new doors
because we�re starting to get the [questions about autism].
Although the other family did not say that their communication increased, they did share a number
of stories highlighting the fact that they were discussing some of the topics reviewed in the support
group. For example, parent 3 recalled:
Just coming from the group, she was trying to say [autism]. She was talking about same and
different�And I asked her, well, what�s the same and she said, �well, we both like to jump
on the trampoline.� And I was like, what�s different? �[My brother] is autism.� And I was
like, what does that mean? And she said, �oh, he doesn�t learn so fast, he doesn�t speak.�
This story illustrates how the children were extending what they discussed in the groups to their
parents and engaging in conversations about autism and how it relates to their family. Indeed, both
families made reference to the fact that, since the group, their children seemed more vocal about
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autism and wanting to know more about it. For example, parent 3 recalled, �the other day, there is a
little girl that lives around the corner who has a little brother� he doesn�t speak very well, so he has
a therapist and [our daughter] was asking if he was autistic.� Parent 2 said that her daughter had
some questions after one of the workshops about some of the differences she was noticing between
her sister and some of the other siblings, so they had a discussion about how autism is a spectrum
disorder: �I was like, well, there are different levels� autism is a ladder, [your sister] is somewhere
here.�
The parents also reported that they were beginning to discuss new topics they have never
talked about as a family before. For example, parent 3 indicated that they had �never discussed cures
or anything� within the family but that, since the workshop, her daughter now talks about �how
[autism] can�t be cured with pills or medicine�The non-curing is a new thing.� She also reflected,
�Saying autistic, and knowing, and putting a label on it, like that�s a new thing for sure.�
Talking about autism. The previous section illustrated the fact that the children are talking
more about autism since participating in the sibling support group. Indeed, being able to talk about
autism in a way that makes sense to the children was another identified benefit of the group. Both
families shared stories of how their children talk more about their sibling and autism. Parent 3
commented, �Today for the first time she like said [autism].� Parent 1 talked about how his daughter
explained autism to her mother and seemed to be �testing the waters as far as being able to explain
[autism]...you know, to see if it makes sense.�
As mentioned in the previous section, parent 2 noted that her daughter understands autism better
because information was provided at her developmental level. Indeed, she stated that her daughter
was able to share an analogy used in the group to explain autism and the difficulties children with
autism have (e.g., with learning), indicating that she was not only understanding what was being
talked about in group, she was also able to bring that information home and talk about it with her
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family. Parent 3 illustrated that her child was confident in explaining autism but that there was
limited opportunity to do so. However, parent 1 pointed out:
There�s not a lot of situations where you can eavesdrop where you can hear her� for all we
know when she�s at school she�s talking about [autism] continually to her friends and her
teacher with what�s going on�so it�s hard to tell what she�s talking about when we�re not
around.
Special family time. In addition to facilitating communication within the family, all the
parents mentioned that the group enabled their families to have a special time together each week.
Indeed, they made group day a �treat� for the family by going out for supper after the session. Parent
2 summarized, �It was nice because we would always go out for supper every Tuesday � a Tuesday
treat. So, it was good.�
Enhanced Sibling Relationships
Parents described situations in which their children�s relationships seemed to be enhanced
because of the sibling support group. Specifically, an improvement in sibling interactions and an
increase in positive feelings towards their sibling were identified.
Increased sibling interactions. In general, both families stated that their children have always
had an active interest in their sibling, even before the sibling support group. As parent 3 put it, �[my
daughter] likes to be involved� whenever there is an opportunity to run outside in the sprinkler or
something like that they do get to do things together,� but that she�s �always kind of hoping for a
playmate� (i.e., from her brother), something which has not happened yet. Indeed, she stated that her
daughter sometimes says, ��Maybe when he�s three he�ll play with me, maybe when he�s four,
maybe five�, like every time, every time, you know, a birthday happens she�ll go, �well, maybe then
next time.��
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Although parent 3 did not notice a significant difference in sibling interactions, parent 2
identified that, as a result of her daughter participating in the support group, her daughter has found a
playmate in her sibling and that there has been an increase in positive interactions between the two
children. She explained:
[My daughter�s] actually having a lot of fun with her [sister] right now� She�s always
asking [her sister] to come out and play with her, even when her [own] friends are here�
Before it was, �go play with your sister,� where [now she�s] coming, �let�s go, let�s go play,�
which is nice to see. I think they�ve worked out how to be together more.
Increased positive feelings. Parents also identified that their children have shown an increase
in positive feelings towards their brother or sister with autism as a result of participating in the
sibling support group. Parent 2 repeated throughout the interview that the biggest benefit of the
support group was that her daughter is more accepting of her sibling and autism and that �she�s more
understanding.�
Patience was another positive feeling identified. Parent 2 explained her daughter is �more
patient. Yeah, a lot more patient� more patient than before [the group].� However, parent 1 stated it
was hard to determine whether his daughter has more patience as a result of the group, commenting,
�She�s gone from an A to an A+. We haven�t noticed anything because she�s just always been
patient with him.�
Peer Support
Both families referred to the fact that the group offered their children a chance to mix with
other children. Most importantly, they articulated that the group especially helped their children
realize that there are other children who have a sibling with autism and who share similar
experiences. Parent 1 highlighted this point, �I think it�s helped that she knows that she is not
alone�she knows that there are other kids out there who have siblings with autism.� Parent 2
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concurred, stating that the group helped her daughter know �that there are other girls� to her level
have the same thing. It�s not just her dealing with it.� Knowing that there are other children who
share similar experiences is particularly important because, as parent 3 indicated, �it�s almost like
[my daughter is] looking for that kind of connection, like looking for someone who understands.�
Both families agreed that the sibling support group offered that opportunity to meet with other
children who understand what it is like to have a sibling with autism.
Areas of Improvement
Despite the number of benefits the group had to offer, the families identified three areas of
improvement for the group, including the need of more time for peer development, group size, and
group meeting time. Each of these are discussed next.
Need More Time for Peer Development
Although both families agreed that the group was beneficial in providing peer support, parent
3 stated that the eight weeks went by very quickly and that it did not seem to be enough time,
particularly for making friends. Indeed, she commented that although her daughter liked everyone:
It was not really enough time. She takes a long time to make friends� She�d talk more about
[the group leader] than she would talk about the other girls�I was kind of hoping that
[she�d] connect a little more with the girls. I think it would be really beneficial if they could
make friendships out of it they can continue on�although that would be pretty tough to do in
eight weeks.
Group Size
Parent 3 also commented that the size of the group was small, stating, �without having them
all show up it is hard� (e.g., to maintain discussions). Parent 1 concurred. Parent 3 also expressed
that it may have been easier for her daughter to develop more friendships if there were more children
in the group.
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Group Meeting Time
The time of the groups was also a challenge for both families, particularly because both lived
out of the city in which the groups were held and had to pick up their child from school early to
make it to group on time. However, both agreed that it would have been better had they lived in the
city. Parent 1 commented, �If we lived in Calgary it wouldn�t have been a big deal because we
wouldn�t have the travel time and the traffic.� Although both families stated that they would have
their child participate again if the group was after school, both agreed that having the group on a no
school day would be helpful. Parent 3 also commented, �It probably would have been better in the
summer; it [would] give her something to do.�
Future Considerations
From the interviews, a number of important considerations were identified for professionals
implementing future sibling support groups. In particular, talking about siblings sooner,
overgeneralizations, and mixed gender groups were identified. Each of these considerations are
discussed in the remainder of this section and, where appropriate, are addressed in the finalization of
the sibling support manual, as discussed in the next chapter.
Talking About Siblings Sooner
Parent 1 commented that, although he thought the group content was good, his daughter had
hoped to talk about her sibling earlier on in the group. He explained:
[My daughter] commented at the early stages that she expected to get into talking about [her
brother] sooner, you know, she was like, �I thought this was about [my brother] and I have
been here for two times��she was anxious to get into it.
Overgeneralizations
Both families also described situations in which their children overgeneralized information
they learned in the group, applying their newfound knowledge inappropriately. For example, the
109
group once had a discussion about how children with autism have a difficult time understanding
other people�s feelings and, even though they may laugh when someone is crying, they may not
understand that the other person is upset and may not necessarily be laughing at the person. Parent 3
commented that, after this particular group, her daughter explained that �if [my brother] is laughing
at something he sees on TV he may not be laughing at what�s happening, he might be thinking about
something from before that he thinks is funny�that�s what Caroline (the researcher) told me.�
However, parent 3 went on to say that:
But then there was something that was obviously funny because he�d like play a movie and
then stop it and rewind it a little bit to the same part and he laughs�it was like obviously a
funny part that was making him laugh and she was trying to tell me, �yeah, it�s not
necessarily that,� but I was like, well, sometimes it is�so that doesn�t work all the time.
Parent 2 had similar difficulties and described how her daughter �would say that the differences
[between her and her sister] were due to autism, and I would try to tell her that even though you like
purple and she likes pink, it�s not because she has autism.�
Both families also indicated that their children now have a label for the condition and
although parent 2 reported that the label has helped her daughter accept autism and its associated
behaviours better, both families agreed there have been times where using the label has been
problematic. For example, parent 1 stated that whenever his son with autism �does [something] that
is not typical, [his sister] has got something to blame it on�she can say that he does that because of
the autism.� Parent 2 made reference to the fact that her daughter was always blaming the autism for
every bad thing her sister would do, and as she said, sometimes �that�s not why she is doing it, it�s
because she is being a little turkey�It�s easy just to blame the autism.�
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Mixed Gender Group
Given the fact that the current pilot group was all girls, the parents felt that it may have been
a different experience if there were boys in the group. Indeed, parent 1 mentioned, �yeah, that would
probably be your biggest challenge, is if you had like a mixture [of boys and girls].�
Summary
In general, the parents agreed that their children enjoyed the group. They outlined a number
of positive aspects about the group, including the fact that it was a safe environment in which their
children felt comfortable talking, which was facilitated by the fact that the group was composed of
all girls. The parents also talked about some of the activities that stood out most for them, including
crafts and discussions about same and different. Benefits of the group were also highlighted,
including the fact that it helped increase the children�s understanding of autism and their ability to
cope with difficult situations. The group also facilitated communication within the family, enhanced
relationships between siblings, and offered peer support. In addition to benefits of the group, the
parents outlined a few areas in need of improvement, including the need for more time for peer
development, a larger group size, and a different meeting time.
A number of future considerations for subsequent sibling support groups were also noted,
and are discussed in the next section. The next section also provides a discussion about the results,
summarizing the findings and how they compare to the literature on this topic. Limitations,
implications, changes to the manual, and suggestions for future research are also provided.
Discussion
Because of the dearth of support for siblings of children with autism, a sibling support group
manual was developed and a pilot project was implemented to evaluate the manual. This project
provided an overview of the research on the needs of siblings of children with autism and services
that could address those needs. The intent of this project was to benefit professionals providing
111
services to children with autism who have little or no knowledge of how to also address the needs of
the siblings. The information provided in the manual will provide readers with an understanding of
the issues siblings of children with autism face, how sibling support groups are effective in
addressing those needs, and guidelines for implementing a sibling support group. The sibling support
group offers information about autism and includes activities and opportunities to develop peer
support, to develop strategies for coping effectively with challenging behaviours, and to share
feelings in a safe environment.
From the interview data, it is clear that the sibling support group proved to be a successful
project. All the parents indicated that their children enjoyed the group and that the group was of
value. Indeed, the results were that parents deemed the sibling support group benefited their children
by addressing their unique needs, such as providing them with information about autism, with the
skills to cope with their unique situations, and a chance to connect with other children who share
similar experiences. Improvement in sibling relationships was also noted as a result of participating
in the sibling support group, as children developed a greater understanding and acceptance of their
sibling and autism.
Overall, the interviewees� responses affirmed research by a number of researchers (e.g.,
Burke & Cigno, 2000; Dodd, 2004; Naylor & Prescott, 2004) who found that sibling support groups
are effective in addressing the unique needs siblings have. Specifically, the parents� reports support
the findings that the sibling support group was beneficial in providing siblings of children with
important information (e.g., about autism and why parents need to be involved), which in turn
helped them gain a better understanding of autism and its associated behaviours (Richman, 2001),
dissipated misconceptions (Burke & Cigno), minimized the negative impact differential treatment
can have (McHale & Pawtelko, 1992), and fostered increased feelings of support towards their
112
sibling (Seligman & Darling, 1997). In keeping with the literature, the parents also described an
increased involvement between siblings (Evans et al., 2001) and acceptance of their sibling (Dodd).
With respect to the work done by Foster et al. (2001), the parents in this project supported the
viewpoint that they were not sure of what to communicate to their children about autism. Thus,
sibling support groups are advantageous because they provide a rich opportunity for information
giving (Beckman et al., 1993) in terms that the children can understand and relate to (Lobato, 1990).
The parents concur. Furthermore, researchers have shown that parents find it easier to talk to their
children about their sibling�s condition at home because their children talked about what they
learned at group, indicating their comfort in discussing the issue (Lobato). Likewise, the parents in
the present project illustrated numerous examples in which family communication has been
facilitated; talking about what their children learned in the group, about autism and how it relates to
their own families, and about new topics related to autism that they never explored before.
The results also re-emphasize the benefit sibling support groups have in giving the children
an opportunity to meet other children who share similar experiences. Such peer support helps to
normalize their feelings, to understand that they are not alone (Nixon & Cummings, 1999), and to
reduce feelings of isolation (Beckman et al., 1993; Shulman, 1992). Knowing that they are not the
only ones with a sibling with autism helps create a safe environment in which the children are
comfortable to share their experiences (Dreier & Lewis, 1991; Naylor & Prescott, 2004). The parents
in this project agreed, commenting that their children felt safe talking about their siblings and
sharing their feelings with the rest of the group.
The respondents in this study identified one major limitation in this project; specifically, that
eight weeks was not long enough for the sibling support group. This is in keeping with the literature,
in which most participants wished the workshops continued on for longer periods of time (e.g.,
Newson & Davies, 1994).
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Limitations
In reviewing the results of this study, several limitations must be considered. First, as
interviews are in-depth and produce a rich source of data, it was necessary to restrict participation in
the study to small samples. However, the small sample size makes generalizing the results difficult.
Generalizing is also jeopardized because the sample is restricted to families seeking services through
STA. Therefore, families who were unable to obtain services through STA or who chose to seek
services elsewhere, are not represented. In addition, the individuals who chose to participate may be
unrepresentative of the target population. For example, parents who encourage openness about their
child�s autism may have few reservations about giving consent for their typically developing child to
participate in the sibling support group. Indeed, both families indicated that they are very open with
their children and that their children are actively involved in their sibling�s therapy, thereby
potentially biasing the sample toward cohesive families.
Another limitation of this study is that all participating siblings were older than their brother
or sister with autism. Therefore, the generalizability of the results to siblings who are younger than
their brother or sister with autism is limited. The gender distribution of the sibling support group
participants is also a limitation. That is, all participants were girls so investigation of the benefits of
this sibling support group for boys was not possible.
Results of this project are based on parental views; consequently, the findings are reliant
upon each parent�s perceptions and willingness to share information. As such, their opinions may not
be generalizable.
It is important to note that some of the positive changes associated with this sibling support
group may not necessarily be related to the curriculum content. For example, non-specific effects
may have been the excitement of participating in a special group just for siblings. It is also possible
114
that the families� enthusiasm for the group may have caused members to communicate more openly
with each other.
Finally, the results are also limited to the extent that it is based on the researchers�
interpretations of the data. Although the author attempted to account for her biases and expectations
in the context of analyzing the data, it is possible that her perceptions influenced aspects of the
investigation (e.g., formulating the research questions), which in turn may have affected the data
acquired.
Despite the limitations, the results from this project can be incorporated into future research.
This project provides valuable information and feedback about the value and effects of the program
components, and provides a valuable resource for supporting siblings of children with autism.
Indeed, the present sibling support group manual will assist professionals to better serve siblings
affected by a brother or sister�s autism.
Future Research and Considerations
Given the limitations outlined above, future studies would benefit from investigating the
benefits of the sibling support group using more diverse samples that recognize different levels of
involvement among family members. More research is also needed to determine whether the sibling
support group is effective for children who are younger than their siblings with children with autism
and mixed-gender groups.
In addition, because the present sibling support group manual was developed from existing
research and parent feedback, additional research is required to elicit feedback from the group
participants themselves to determine whether or not they found the group to be beneficial.
Given the fact that sibling experiences may vary depending on the severity of the symptoms
the siblings with autism have, it may be important for future researchers to explore the effectiveness
of this sibling support manual based on the severity of the brothers or sisters with autism.
115
Ideas for future work on the existing manual include offering opportunities for siblings to
meet more regularly at follow-up meetings or outings, creating information packs for siblings, and
providing feedback forms midway through the groups to ensure everyone is satisfied and to identify
which activities have been successful. Finally, because not all siblings of children with autism will
want to join a group, support on an individual basis may need to be implemented.
Parental feedback. Two noteworthy changes to the pilot sibling support group manual were
made to accommodate some of the considerations parents noted in the interviews. All considerations
discussed in the interviews and, where appropriate, any changes made in light of these
considerations are discussed.
Although one father noted that his daughter had hoped to talk more about her sibling sooner,
the session content was organized to fit the stages of group development, so no changes were made
to the order in which content is presented. However, an overview of the weekly discussions was
added to the second session�s agenda so that the group participants know what to expect in the
upcoming weeks. A suggestion to ask for participant input regarding session content was also added.
In order to address the children�s tendency to overgeneralize what they have learned during
group, a �Debriefing� section was added in section three of the manual, highlighting the importance
of debriefing with the children about the topics covered in the session and how some information
may not apply to everyone�s sibling. The suggestion to encourage the participants to talk to their
parents about what they learned and how it relates to their own brother or sister is offered.
It is important to note that, although the parents noted that the group experience might be
different if it was mixed-gender, the sibling support group manual was created explicitly for mixed
gender groups as a means to provide for more varied perspectives and peer modelling, so no changes
to the manual were created based on this consideration.
116
Implications
Results from this study hold important implications for service providers for children with
autism. The need remains for a more comprehensive approach to treatment that acknowledges and
addresses the needs siblings of children with autism. The results of this project have confirmed the
value of the sibling support group for this population. Siblings of children with autism have special
needs requiring attention; the current challenge for service providers is to act upon the growing
awareness of these needs and include sibling support programs into their program planning. This
project offers awareness and understanding of sibling needs in an attempt to help service providers
become more comprehensive in the services they offer their families. The sibling support group
manual provides a clear set of guidelines for professionals interested in implementing a sibling
support group for siblings of children with autism. As a result, service providers are better able to
extend their services to siblings.
Summary
Few services exist to support siblings of children with autism, despite the fact that they have
unique needs that require attention. Service providers are challenged to provide integrated services
that meet the needs of all family members, including siblings. This project has confirmed the value
of sibling support groups, as they are effective in addressing the varying needs and concerns of
siblings, such as the need for factual information about autism, the need to share their experiences,
and the need for emotional support and peer understanding. In addition, participation in sibling
support groups is associated with other benefits, such as an improvement in sibling relationships and
facilitated communication within the family.
117
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Appendix A
Agency Approval
Society for Treatment of Autism 404-94th Ave. S.E. Calgary, AB T2J 0E8 (403) 253-2291 Date: October 16, 2006
Re: CAAP Final Project: Agency Agreement
Dear CAAP Program Research Coordinator,
This letter indicates our agency approval for the partnership between Society for Treatment of
Autism (STA) and CAAP: Counselling Initiative. I am providing agency agreement for Caroline
Buzanko to have access to STA for the student�s CAAP final project entitled: Supporting Siblings of
Children with Autism. I support Caroline�s interest in Supporting Siblings of Children with Autism
and will provide the appropriate resources for her to carry out this research. As such, she will have
access to resources (e.g. group participants and group facilitators) for the purpose of this research
only and according to the terms of her CAAP Final Project Letter of Intent and ethics protocol.
With respect to the ownership of the original raw data (client case notes, facilitator�s memos,
information about groups) generated for the research project, STA owns this data. In accordance
with CAAP Intellectual Property Guidelines and CAAP Guidelines for Authorship and Guidelines
for Ownership of Research Materials (forthcoming), Caroline Buzanko will be the sole author for
her CAAP final project. This means that she owns copyright to the project and has the right to
disseminate the study through conference presentations and/or publications. Authorship to STA staff
or CAAP final project committee members would normally be granted in conference presentations
and/or publication if substantial professional contribution took place. This contribution would
normally include identifying the problem or hypothesis, contributing to experimental design,
organizing and conducting statistical analysis or qualitative analysis, interpretation of results, and/or
writing a major portion of the paper.
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Caroline Buzanko may disseminate the results of the study with recognition of STA or may be
required to omit this information if participant anonymity is threatened. Publication by agency
members of the results of Caroline�s study will include permission and consultation with the student
and authorship.
Sincerely,
Wayne Sklarski Director of Society for Treatment of Autism
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Appendix B
SSHRC Notice of Award
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Appendix C
Letter of Invitation
Dear Parent(s), You are being invited to participate in a research project on sibling support groups. Please read the following information regarding the research study, Supporting Siblings of Children with Autism so that you can make an informed decision regarding your participation. The purpose of this project is two-fold: to develop and implement a psychoeducational/support group, designed specifically for siblings of children diagnosed with Autistic Disorder; and to evaluate the groups from the parent�s perspective. These groups are specifically designed for siblings between the ages of 5 and 9 years old. The evaluation will answer the research question, according to parents, what are the benefits of sibling support group membership? Participation in this study will require you to engage in a one-time confidential interview with the researcher. This one-to-one interview may vary in length from one to two hours. During this session, the conversation will be audio taped, and the questions will pertain to your thoughts about the benefits and challenges of having your son or daughter participate in the sibling support group. You will be provided with a choice of options for the location of this interview, whether it is in the privacy and convenience of your own home, or in a private office. You should be aware that your child(ren) can still participate in the sibling support group, even if you choose not to participate in the evaluation component. Consent forms for your child(ren)�s participation in the group is required. If you do consent to participate in this study, you are free to withdraw at any time for any reason. Your participation is voluntary. You are free to refuse to answer any questions and the researcher will not probe for answers. There is no specific risk of participating in this study. The degree of risk is about the same as having a discussion with someone about what you are thinking and feeling. Having your son or daughter participate in the sibling support group will help increase his or her understanding of autism and will aim to help him or her to cope effectively with their brother or sister�s challenging behaviours. Your son or daughter will also have the opportunity to express their feelings, which might help facilitate communication within your family.
By participating in the interview, you will be able to express your views and address any concerns you have about the sibling support group. Your opinions will be valuable in addressing areas for improvement for the siblings support groups. Furthermore, your opinions will help pave the way in establishing services for siblings of children with autism and for future research. Data will be gathered in such a way as to ensure anonymity. Your name or any identifying information will not be released to anyone and will not appear on transcripts, reports, or published papers. Any information that could lead to the identification of yourself or your son or daughter will not be included. Direct quotes from the interviews may be used in published reports for the purposes of teaching and learning. Once collected, interview notes and audiotapes will be kept in strictest confidence in locked file cabinets in the home office of the researcher. All information will be held
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confidential, except when legislation or a professional code of conduct requires that it be reported. Only group results will be reported in any published studies. The raw data will be destroyed by shredding after completion of the study. If interested, participants are able to request a summary of the results of the study, as well as information on resulting publications from the investigators. If you have any questions, please feel free to contact Caroline Buzanko through e-mail, [email protected] or phone, (403) 936-8507; or research supervisor, Dr. Shelly Russell-Mayhew, C. Psych. at the University of Calgary, (403) 220-8375. For any questions about your rights as a research participant, contact the Athabasca University�s Research Ethics Board (REB). The REB is a group of people who review the research to protect research participant�s rights. The contact information for the REB is: 1-800-788-9041. Two copies of the consent form are provided. Please return one signed copy to Caroline Buzanko using the self-addressed envelope. Be sure to keep a copy of the consent form for your records. Thank you for considering participation in this research study. Sincerely,
Caroline Buzanko
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Appendix D
Consent for Sibling Support Group Participation
I, the undersigned, hereby give my consent for my son/daughter to participate in the Supporting Siblings of Children with Autism support group at Society for Treatment of Autism. I understand that such consent means that my son/daughter will take part in eight 90-minute sessions that incorporate both recreational and informational activities. I understand that my son/daughter�s participation in this support group is completely voluntary. I understand that my son/daughter�s participation in this support group may be terminated at any time by my request or at the request of my son/daughter. Participation in this support group and/or withdrawal from the group will not adversely affect my son/daughter, or myself, in any way and will in no way affect the other services received at the Society for Treatment of Autism. Support groups for siblings of children with disabilities have shown to have positive outcomes because they can address a number of siblings� needs and concerns, such as the need for factual information about disabilities and the need for contact and emotional support from peers in similar situations. This peer support is particularly important for siblings of children with autism, as they typically report more feelings of shame and embarrassment of their brother or sister than siblings of children with other disabilities. By participating in the sibling support group, siblings will have the opportunity to learn more about autism, to learn how to cope effectively with stressful situations, and to express their feelings, which might help facilitate communication within the family. To date, there have been no reports of sibling support groups being harmful. However, there may be a risk involved in sharing any information in a group setting in that this information may be shared outside of the group setting by other sibling participants. It is also important to note that groups may not be beneficial to everyone. Some siblings might find group situations more threatening than helpful. Consequently, these children may benefit more from a private, individual approach. It is important for you, as the parent, to take these factors in to consideration before providing consent for your son/daughter�s participation in the group. I AM INDICATING MY CONSENT BY RETURNING A SIGNED COPY OF THIS CONSENT FORM TO CAROLINE BUZANKO. I have retained a copy of this consent from for my records. I understand that if I have any questions I can contact Caroline Buzanko at [email protected] or (403) 936-8507; or Dr. Shelly Russell-Mayhew, R. Psych. at the University of Calgary, (403) 220-8375. _____________________________ ____________________________________ Date Signature ______________________________ Participant's Printed Name
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Appendix E
Consent for Research Participation I, the undersigned, hereby give my consent to participate in a research project titled Supporting Siblings of Children with Autism. I understand that such consent means that I will take part in a one-on-one confidential interview that will be audio taped. I also understand that the time required for the interview is between one to two hours. I understand that participation in this research study is completely voluntary and is not a condition of having my child(ren) participate in the sibling support group. I understand that participation in this study may be terminated at any time by my request or at the request of the investigator. Participation in this project and/or withdrawal from this project will not adversely affect me in any way. I understand that this study will not involve any greater risks than those ordinarily occurring in daily life. I understand that the responses will be obtained anonymously. All information will be held confidential, except when legislation or a professional code of conduct requires that it be reported. I understand that my consent is also required for my child(ren)�s participation in the sibling support group. I understand that only group data will be reported in any published reports. I understand that I will be able to request a summary of the results of the study, as well as information on resulting publications from the investigators. I AM INDICATING MY CONSENT BY RETURNING A SIGNED COPY OF THIS CONSENT FORM TO CAROLINE BUZANKO. I have retained a copy of this consent from for my records. I understand that if I have any questions I can contact Caroline Buzanko at [email protected] or (403) 936-8507; or Dr. Shelly Russell-Mayhew, C. Psych. at the University of Calgary, (403) 220-8375. _____________________________ ____________________________________ Date Signature ______________________________ Participant's Printed Name
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Appendix F
Interview Guide
1. Please describe your satisfaction with each of the following elements of the workshops:
a. Meeting time b. Meeting location c. Communication and contact with the group leaders d. Workshop format e. Workshop content
2. Has your child seemed to enjoy the group meetings? a. What has he/she enjoyed or not enjoyed? b. Do you feel your child felt safe talking about his or her brother or sister with the
group? i. Please explain.
c. Has your child seemed upset by any meeting? i. Please explain.
d. Has any particular activity made a strong impression on your child? i. Which activity?
ii. How did this affect you and your child?
3. Overall, are you glad your child participated in the workshop series? 4. What impact has the sibling support group had on your child�s knowledge of autism?
5. What impact has the group had on your child�s feelings towards his/her brother or sister?
a. What impact has the group had on your child�s ability to cope with his or her brother or sister�s challenging behaviours?
6. What impact has the group had on your child�s feelings towards other family members? 7. What impact has the group had on your child�s self-image?
8. Has the workshop seemed to help your child develop peer support?
a. How has the peer support from the group affected your child?
9. Has your child talked about what has happened during the meetings? a. How has the group impacted your communication with your child (i.e., about autism
the child�s brother or sister)?
10. What do you think your child has learned from the workshops? 11. How has your child benefited from the workshop?
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12. Is there anything I should consider for future workshops to make them more enjoyable or informative?
a. How?
13. Any other comments?
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