Exceptional Children

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Exceptional
Children
http://ecx.sagepub.com/
The Quality of Life of Siblings of Children with Autism Spectrum Disorder
Tinneke Moyson and Herbert Roeyers
Exceptional Children 2011 78: 41
DOI: 10.1177/001440291107800103
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Vol. 78, No. 1, pp. 41-55.
©2011 Council for Exceptional Children.
The Quality of Life of
Siblings of Children With
Autism Spectrum Disorder
TINNEKE MOYSON
HERBERT ROEYERS
Ghent University, Belgium
ABSTRACT: This study investigated how siblings of children with autism spectrum disorder (ASD)
describe and define their quality of life. Using a qualitative research design, the authors collected
data through a 4-stage process which included in-depth interviews of 17 children ages 6 to 14 and
focus groups. All of the children with ASD were male and between the ages of 5 and 16 with mild
to moderate impairments; all of the participating families lived in a Dutch-speaking region of Belgium. Analyzing data according to the principles of grounded theory resulted in the identification
of 9 domains of sibling quality of life (SibQol). The apparent invisibility of ASD emerged as an
important theme. Results indicate that siblings of children with ASD can define their quality of
life, that unique characteristics of ASD give the siblings’ experience a highly personal interpretation, and that the SibQol concept can be used to support siblings of children with ASD.
utism spectrum disorder
(ASD) is characterized by impairments in social interactions, impairments in verbal
and nonverbal communication, and restricted and repetitive patterns of behavior (American Psychiatric Association, 2000).
These typical impairments and the complexity
and unpredictability of ASD place the family at
greater risk for stress and psychological difficulties
(Macks & Reeve, 2007). Parents of children with
ASD not only report increased levels of stress and
impaired family functioning but also describe
parenting more often as an emotionally burdensome experience (Hastings, 2007; Petalas, Hast-
A
ings, Nash, Lloyd, & Dowey, 2009; Rao & Beidel, 2009).
Over at least the past 5 decades researchers
have tried to describe, to define, and to explain
how siblings adjust to a brother’s or sister’s disability (Benson & Karlof, 2008; Kaminsky &
Dewey, 2002; Rivers & Stoneman, 2008; Verté,
Roeyers, & Buysse, 2003). Because of the unique
characteristics of ASD one might assume that
there is a difference between the effects of ASD
and other disabilities on the sibling relationship
and on the social, behavioral, and psychological
adjustment of these siblings. However, findings
regarding the adjustment of siblings of children
with ASD, when compared with the adjustment
41
of siblings of children with another type of disability, have been mixed and inconsistent. Kaminsky and Dewey (2001) found that siblings of
children with ASD reported lower levels of intimacy, prosocial behavior, and nurturance by their
brother or sister with ASD compared to siblings
of children with Down’s syndrome and to typically developing children. Macks and Reeve
(2007) suggested that demographic characteristics
such as sex, family size, socioeconomic status, and
birth order were more likely to impact the sibling
of a child with ASD than siblings of typically developing children. On the other hand, Hastings
(2007) and Pilowsky, Yirmiya, Doppelt, GrossTur, and Shalev (2004) failed to find significant
differences in the behavioral, social, and emotional adjustment of siblings of children with
ASD and siblings of children with other diagnoses.
There are at least three different explanations
for these mixed results. First, studies on siblings’
adjustment reflect methodological differences, the
use of different measurement tools, variance of
perspectives, and the use of different comparison
groups (Hastings, 2003a; Macks & Reeve, 2007).
Because there is no single generally accepted
instrument to measure siblings’ adjustment, researchers have to choose an approach from existing measurements and methods. Each method
conceivably measures a different aspect of siblings’
adjustment, so it is difficult to compare the results
of separate studies. Moreover, research has shown
that the perspective of the participants in sibling
studies is strongly colored by their background
(Cuskelly & Gunn, 2006; Lobato & Kao, 2005).
Consequently this perspective needs to be taken
into account when comparing different studies.
Studies on siblings’ adjustment
reflect methodological differences, the
use of different measurement tools,
variance of perspectives, and the use
of different comparison groups.
A second explanation can be found in the
definition of adjustment. The principal goal of the
majority of sibling research is to examine sibling
adjustment. However, this concept is defined differently in various studies, with some studies focusing on only a particular part of this concept.
Whereas some studies address the sibling relationship and the mutual interactions between siblings
and their brother or sister with ASD (Kaminsky
& Dewey, 2001), other researchers try to describe
the psychosocial and emotional adjustment of siblings (Benson & Karlof, 2008; Cuskelly & Gunn,
2006; Kaminsky & Dewey, 2002; Pilowsky et al.,
2004; Rao & Beidel, 2009). Behavioral adjustment is another aspect often studied; within this
area there is disparity as well, with some researchers equating behavioral adjustment with
psychological adjustment (Hastings, 2003b). The
lack of an unambiguous definition of adjustment
highlights the fact that, to date, there is no concept that can completely describe the experience
of being a sibling of a child with ASD.
Third, the influence of children with ASD
on their siblings is modified by several factors relating to the characteristics and dynamics of the
individual family members and of the family as a
whole, such as gender, age, birth order, family
size, socioeconomic status, parental response to
the child, temperament, and coping styles (Giallo
& Gavidia-Payne, 2006; Macks & Reeve, 2007;
Mascha & Boucher, 2006; Rivers & Stoneman,
2008; Ross & Cuskelly, 2006). Assuming the influence of all these variables, different studies can
present only mixed and conflicting results. Further, because most of these variables cannot be
changed, it may be more useful to instead study
and work directly with siblings of children with
ASD to allow them to explore and if necessary
modify their thoughts and feelings about their
brother or sister with ASD (Mascha & Boucher,
2006).
Meadan, Stoner, and Angell (2010) argued
that sibling research should focus on “hearing the
voices of the siblings by asking them directly for
their perspectives, by attempting to understand
their adjustment, and by having them identify
areas of needed support” (p. 98). Understanding
siblings’ experiences and perceived needs is necessary for the development of effective sibling support programs (Barr, McLeod, & Daniel, 2008).
Qualitative research may provide a deeper and
more comprehensive understanding of the experiences of siblings of children with ASD. Recent
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Fall 2011
qualitative studies on the experience of siblings of
children with ASD not only confirm that these
children experience stressful life conditions but
also reveal some previously hidden themes, such
as being afraid of and being a victim of violent
behavior, and acceptance of the child with ASD
(Benderix, Nordstrom, & Sivberg, 2006; Mascha
& Boucher, 2006; Petalas, Hastings, Nash,
Dowey, & Reilly, 2009).
Meadan and colleagues (2010) stated that
understanding the experiences of siblings of children with ASD and developing a sibling support
system based on that insight might affect and enhance the quality of life for all family members of
children with ASD. This concept of quality of life
(QOL) and, more specifically, the concept of
family quality of life (FQOL) has recently
become important in the area of special education
(Jokinen & Brown, 2005; Schalock, 2004).
FQOL intends to describe the QOL of all family
members and the QOL of the family system and
the members’ influence on each other (Brown,
Anand, Fung, Isaacs, & Baum, 2003; Turnbull,
Brown, & Turnbull, 2004). However, for the
most part, researchers have only asked parents to
describe their FQOL. The opinion of the siblings
has been subsumed under the opinion of the parents, even though research has shown a discordance between parents’ and siblings’ QOL reports
(Houtzager, Grootenhuis, Caron, & Last, 2005).
Children with ASD present a wide range of
abilities and behavioral profiles. The extant literature on siblings’ adjustment has mainly examined
siblings of children across this autism spectrum,
providing mixed results because of the different
clinical profiles. Increasing numbers of children
meet the current diagnostic criteria for ASD and
have IQs in the average or above-average range;
these children and their families—including their
siblings—have unique service and intervention
needs. In this study we chose to focus on siblings
of children with ASD without an intellectual disability. The sibling quality-of-life concept
(SibQol) we introduce assists in describing the
dynamic relationship between siblings and their
brother or sister with ASD and might be used to
develop support programs for siblings of children
with ASD.
METHOD
P A R T I C I PA N T S
In addition to focusing on siblings of children
with ASD without intellectual disability, our inclusion criteria were the age of the participant
(6–14 years old) and the age of the sibling with
ASD (3–18 years old). We recruited participants
through a parents’ association, family support services, rehabilitation centers, and special schools.
Based upon the principles of convenience sampling, we included all the siblings who met the
criteria. This resulted in 17 participants, belonging to 15 Caucasian families. Of the children
with ASD, (a) all were male; (b) their ages ranged
from 5 to 16 years, with a mean age of 9.65 (SD
= 3.55); (c) they had received a diagnosis of
autism from a multidisciplinary diagnostic clinic;
(d) they all resided at home; and (e) three of them
attended a special school for children with ASD.
According to their mothers’ reports, the children
with ASD had either mild (N = 9) or moderate
(N = 6) impairments.
Ten participants were female, and seven were
male; their mean age was 10.41 years (SD =
2.26). With regard to other family characteristics,
nine participants were older than their brother
with ASD; 13 participants had no other siblings
other than their brother with ASD; one participant also had one other typically developing
brother or sister; and three participants had three
other typically developing siblings.
INSTRUMENT
We were particularly interested in the sibling experience from the participants’ own frame of reference. The choice of a qualitative research design
was obvious; more specifically, we chose to use indepth phenomenologically based interviews (Seidman, 2006). This method combines life history
and in-depth interviews in which the interviewer
builds upon and explores the participants’
responses to open-ended questions. The model
involves conducting three separate interviews
with each participant. In the first interview, we
asked the siblings to say as much as possible about
themselves up to the present time. The second interview concentrated on the experience of being a
sibling and on quality of life. In the third and
43
TABLE 1
Phenomenological Interviews of Participants in the Study
Interview
Interview 1
Focus on the history of the sibling
Questions
Until today, what were the most important events
in your life? (drawing timeline)
Which things that are happening now in your life
would you like to stay the same forever?
Can you tell me when you first realized/felt/saw
that your brother was different?
Interview 2
Focus on the experience of being a sibling and on
quality of life
Drawing a thermometer measuring how you feel as
a sibling,
If I had a magic wand, what would you want me to
change you/your brother/your parents/other people
(relatives, friends, etc.) into, so you would rise on
the thermometer?
How would I have to change you/your brother/your
parents/other people (relatives, friends, etc.) so you
would fall on the thermometer?
What would be different in your family/in your
life/in your parent’s life if your brother didn’t have
ASD? Would some things be better or worse?
Interview 3
Focus on reflection on the meaning of being a sibling
If other people ask you how it feels to be a sibling,
what do you answer ?
Are there some things we didn’t talk about that you
would like to talk about?
Sometimes things can change after having talked
about it. Do you feel that you or some things at
home have changed by the things we talked about?
final interview, we asked participants to reflect on
the meaning of being a sibling and on participating in the study. Table 1 provides the framework
for the interviews for this study.
PROCEDURE
We obtained written consent from the parents
and the participants prior to commencing the
first interview. We provided all the families with
information on the aims of the research and the
potential topics to be discussed during the interviews via an information sheet, which included a
child-friendly version linked to the consent form.
D ATA A N A LY S I S
We interviewed participants at their homes. Each
interview lasted between 40 and 70 min and was
digitally recorded. The records of the interviews
were transcribed verbatim. Field notes provided
details and descriptions of the interview, the participant, and his or her family members. The second and third interviews started with reading and
discussing the transcript of the previous interview
(member checking), to guarantee and improve the
validity of the research.
Following grounded theory data analysis procedures (Corbin & Strauss, 2008; Creswell,
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Fall 2011
2007), we used a four-stage data collection strategy. For Phase 1 data collection, we interviewed
four participants three times each. The first author read the 12 transcripts twice line by line,
noting comments in the margins. Following this,
the first author and research assistants reread the
transcripts and coded them by means of NVIVO
8, a computer-based qualitative data management
program. This open coding phase resulted in a
first list of codes and enabled us to identify salient
themes, worthy of closer explanation, concerning
the sibling experience and the influence of ASD
on the sibling relationship.
Phase 2 consisted of individual interviews
with 10 participants. Because data saturation was
achieved after the three interviews with the 10th
sibling, we decided to stop the data collection.
This second phase intended to extend the coding
list (open coding) and later on to explicate the
codes in more detail (axial coding). A series of intensive individual (by the first author) and team
approaches (by research assistants) to data analysis
were conducted with NVIVO 8. We critically
evaluated each coded quotation to ensure that the
selected code indeed reflected the meaning behind the quotation. If necessary, we re-coded the
quotation or we formulated new codes. Finally,
using a number of analytic strategies (i.e., making
comparisons, asking questions, turning some concepts inside-out and looking for negative cases)
there was an interaction between the researchers
and the data, which assisted to probe the data and
to understand possible meaning. This continuous
process of open and axial coding and constant
comparison of the codes enabled us to identify
themes and patterns related to the central phenomenon, that is, the siblings’ experience (selective coding; Corbin & Strauss, 2008; Miles &
Huberman, 1994).
For Phase 3’s member-check interviews with
five participants, we randomly chose two participants from the 14 we had interviewed in Phase 2
and included the three remaining participants we
had not yet interviewed. The purpose of this
phase was twofold. First, we wanted to test the
themes and the patterns identified in Phase 2.
Based upon the information gathered in this
phase, we could refine our first results. The second purpose of this phase was to explore if and
how siblings could define their quality of life. To
achieve this we first explained the general concept
of quality of life, then described the 10 quality of
life domains generally accepted as important for
children: physical well-being, psychological wellbeing, moods and emotions, self-perception, parent relation and home life, autonomy, financial
resources, peers and social support, school environment, and bullying. We asked the participants
to reflect on these domains and to tell us if these
were also important for them as a sibling of a
child with ASD. We also asked them if they could
think of other important domains of quality of
life.
Phase 4 included two small focus groups
(two times with three different participants
each). The function of the focus groups was to
clarify the apparent invisibility of autism spectrum disorder.
ADEQUACY
OF
THE RESEARCH PROCESS
We ensured rigor by incorporating procedures to
address credibility, transferability, and dependability (Corbin & Strauss, 2008). We used two techniques for addressing credibility: triangulation of
data and member checking. We triangulated data
by using trained research assistants to collect and
analyze data and by using different data collection
methods (i.e., interviews and focus groups).
Member checking was used both at the beginning
of the second and third interview with each sibling and at the end of each focus group. In addition, we conducted five individual member-check
interviews.
Transferability was enhanced by including
participants from different geographical regions of
the country and by ensuring that participants reflected a variety of characteristics (e.g., age, gender, birth order); both expanded the diversity of
the sample. Using multiple researchers and research assistants helped us to ensure dependability. The research team regularly discussed their
agreements and disagreements in working to
achieve consensus on themes and patterns.
RESULTS
Nine domains of quality of life of siblings
emerged from the analysis process:
45
1. Forbearance
ignorance. Of course, this is not always easy, especially not in situations where characteristics typical of ASD are visible.
2. Mutual understanding
3. Joint activities
Other children ask me: What is wrong with
your brother? But my mother does not allow
me to say, because one time he was jumping
rope, but he swung too slowly and when he
jumped, he was jumping wrong and his head
was in a strange position, and everybody
started laughing at him. (Peter, 7 years)
4. Private time
5. Trust in well-being
6. Acceptance
7. Exchanging experiences
8. Social support
9. Dealing with the outside world
These nine domains represent aspects of the sibling experience important for a good quality of
life as the sibling of a child with ASD.
In addition to identifying these domains,
however, during the process of this study the
theme of the invisibility of ASD emerged as a connecting thread throughout the participants’ narratives. Although the invisibility, or apparent
absence, of ASD cannot be described as a QOL
domain, the stories of our participants illustrate
how siblings’ well-being and quality of life is influenced by this invisibility.
THE INVISIBILITY
OF
ASD
Many children with ASD have a “normal” physical appearance. In addition, some typical ASD behaviors are not only not considered problematic
but also seen as positive—which can create the
impression that the individual can “control” the
ASD, or even that ASD is not always present.
This invisibility has both advantages and
disadvantages. Sometimes siblings welcome this
kind of invisibility because other people will not
stare at or negatively comment on the child with
ASD. On the other hand, the participants in our
study acknowledged that other people were not
always willing to believe that their brother had a
disability.
Our granny is always saying: “he’s a normal
kid—I used to be like that too when I was
young,” but of course it is different: He has
autism and she doesn’t! But our granny does
not know what autism is. In fact she doesn’t
want him to have autism; her grandson has
to be perfect. (Rebecca, 14 years)
Some families discourage revealing that a
family member has ASD, fearing prejudice or
I want to maintain the greatest secrecy about
his ASD, because otherwise my friends will
laugh. Once, at Peter’s birthday party, Roger
almost uncovered my secret, because my
brother was also at this party and he started
to talk to Roger. I really thought he would
find out, but fortunately he didn’t and I
quickly started to talk about something else!
(John, 8 years)
Because children with ASD often behave like
children without ASD, to their siblings it can
seem as though they are only “bothered” by ASD
once in a while.
I don’t always like my brother, only when he
is not having his autism. Then I say phew, he
is normal today, so we can have a good time.
But then I don’t like him because of his
ASD, but because he has no ASD! (Eric, 10
years)
When their brother or sister “has no ASD,” siblings feel that they can interact with their brothers
or sisters as if they too were typically developing
children.
When we were younger, we often went to the
beach, playing with the ball or building
sandcastles. Then we were just siblings, you
understand? Actually, we had a lot of such
times without his ASD. (Catherina, 13 years)
The siblings in our study also observed that
their brothers with ASD behaved better around
other people in the neighborhood than at home.
Sometimes people say it isn’t so bad to have
Ivan as a brother, but they should see how he
treats me. Because I’m his brother, he can
curse at me. He will never curse at other people! And he’s not only cursing at me, he hurts
me or he gets angry with me! He can control
himself if other people are around! (Eric, 10
years)
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Fall 2011
Because of this “having ASD on occasion,” some
siblings may think that their brother or sister does
not always have ASD and has a choice. This leads
to siblings sometimes doubting the correctness of
the diagnosis or wanting to have ASD too, especially if they perceive that their brother or sister
benefits from having ASD.
For my birthday I want a special costume, so
I can dress up as someone who has ASD.
Then I can watch much more television and
I can eat only the things I want to eat.
(Claire, 6 years.)
In our study, participants who remembered
the process of their brother being diagnosed with
ASD—especially if this took a long time and if
there were a lot of doubts—were more likely to
doubt the diagnosis.
There are some things I can’t understand.
The doctor said that my brother has ADHD
and ASD. But ADHD means being wild and
fighting all the time and being rude and
ASD means that you are quiet and that you
are keeping in the background. How is it
then possible to have both disorders
together? (Luke, 11 years)
Finally, because of the invisibility of ASD,
the outside world cannot properly assess the impact of a child with ASD on the family as a whole
and on the siblings in particular.
You just can’t explain it to others. For example my brother likes to talk about computers
and that sort of stuff—he knows a lot about
it and other people only think he’s just a
smart boy. But of course, they don’t realize he
can’t stop talking about it and that he often
repeats the same topics. Oh yes, it’s nice to
listen to him for 15 minutes, but for us it’s
all day long . . . every day. (Laura, 12 years)
NINE DOMAINS OF SIBLING
QUALIT Y OF LIFE
Domain 1: Forbearance. The typical, sometimes bizarre, aggressive, or annoying behavior of
a brother or sister with ASD can be hard to bear.
Therefore, siblings look for ways to cope with this
behavior—some more effective than others.
The participants in our study generally
would not let their brother push them around, although they realized that reacting might only
worsen the situation.
Sometimes, he can’t stop teasing me when we
are sitting in the car; he is always sitting
down next to me, and then he starts making
his irritating sounds, or wiggling his legs and
pushing me. . . . I know I’m not allowed to,
but sometimes I just push back or pinch
him. (Petra, 10 years)
Other siblings thought it was better to ignore the
behavior and to control oneself:
Before I knew he has ASD, I always reacted
to him, although I knew it made things
worse. Now I try to ignore it, because there is
no point to reacting. (Rebecca, 14 years)
Being aware that their brother with ASD could
not always control it, some participants excused
the behavior:
He can’t help it, can he, so there is no need
to get angry at him, even when he really
annoys you. (Monica, 9 years)
Adjusting to difficult behaviors also can reduce conflicts, and after a while siblings get used
to the behavior and some of them even learn to
appreciate some aspects of ASD:
Given these conflicting emotions, it is striking that some siblings, when comparing themselves with siblings of children with other
disabilities, consider themselves lucky.
Ivan knows a lot, almost everything about
animals or astronomy. During dinner he
keeps on telling about it; cannot be silent.
So, I’ve learned a lot from him! (Eric, 10
years)
It is much worse if your brother is in a
wheelchair, because then, you really cannot
do anything together. Needing a wheelchair
or going to a special school means that you
really have a disability. ASD is not really a
disability, is it? Especially because you don’t
have it every day. (Sophia, 11 years)
Domain 2: Mutual Understanding. Understanding one other is essential to successful interactions between people. For the participants in
this study it was important that their brothers
with ASD were able to speak, so they could talk
with each other and understand each other:
47
He can tell really funny things, and I like
that. (Monica, 9 years)
Following this same reasoning, participants
regretted the fact that their brothers did not
always want to talk:
Although he can talk, it’s a pity he doesn’t
like to talk. He doesn’t talk a lot. He only
wants to be allowed to be silent all day.
(Rebecca, 14 years)
Moreover, the participants in our study recognized that their brothers with ASD could not
understand emotions. They did not consistently
feel understood and had not ever had the feeling
that their brother was laughing with them.
The final communication limitation in the
sibling relationship is the fact that, generally, the
child with ASD only wants to talk about his or
her own areas of interest.
It is hard that he always wants to talk about
the same things: the dinosaurs, trains, the
ancient Romans. (Sophia, 11 years)
At a family party he once started to talk
about embarrassing things and we couldn’t
stop him! (Roy, 14 years)
Domain 3: Joint Activities. The participants
in our study welcomed the opportunity to do
things with their brothers with ASD, particularly
“normal” things. For these children, “normal”
meant the things they would do if their brothers
did not have ASD. To them, it was important
that ASD did not hinder typical childhood activities. However, some activities will indeed be limited because of ASD. The participants in our
study recognized that they could still do “normal”
things, albeit sometimes a bit differently.
When we play a game, he always makes his
own rules. Then, playing together is successful. (Laura, 12 years)
I always let him win, otherwise he gets angry.
(Claire, 6 years)
It is, however, impossible to adapt everything; siblings of children with ASD do realize
and regret that some things simply cannot be
done with their brother or sister.
We can’t go on holiday to another place. My
brother is used to going to that one particu-
lar house at the seaside and changing this
would upset him too much. I would rather
like to go abroad or to the mountains, but
with Thomas it isn’t possible. (Monica, 9
years)
Domain 4: Private Time. Although it is important for siblings to do things with their
brother or sister with ASD, participants also emphasized the need to not be a sibling for a while.
They wanted “private time” to do things without
their brothers and to do things one-on-one with
their parents. Having a place of their own at
home, having their own friends, or going to a different school than their brothers were all important for the siblings’ well-being. Private time
proved to be helpful in more difficult situations.
Next week Ivan is going to camp. I’m looking forward to doing all the things I can’t do
when he’s at home, like reading a book
peacefully, or playing on the computer—because when I start on the computer, he always interrupts me—or watching television
peacefully, because Ivan always fidgets when
he’s watching television. I also think we will
go out for dinner, or maybe to the dinosaur
museum. We can do these things with Ivan
too, but then he claims all the attention or
dominates the conversation. (Eric, 10 years)
Domain 5: Trust in Well-Being. Sibling wellbeing is dependent on the well-being of the child
with ASD. Participants were strongly concerned
about the welfare of their brothers and were regularly haunted by worries: Will he or she have
friends? Were those friends accepting him the way
he is? Is he feeling sad because of the ASD?
He is always looking for new friends who
want to play with him, but a lot of children
don’t want to be his friend because he is different. It’s so sad to hear that he has no one
to play with at school. (Christina, 12 years)
Participants also worried about the future,
when their brothers would be grown up: Will he
be able to work? Can he live on his own? It was
also striking that participants expressed feeling
sorry about the ASD, not only for themselves as a
sibling but also for their brothers. Some participants even said that it would be better if they
themselves also had ASD:
48
Fall 2011
It would be much better if I had ASD too,
because then I could understand and handle
him better. (Monica, 9 years)
Because of these strong concerns about the wellbeing of their brothers, participants were pleased
with the help and the support their brothers received:
You know, I’m glad he can go to that special
school for children like him. The teachers
there know exactly how to treat him. (Steve,
11 years)
Domain 6: Acceptance. Learning to accept
that their brothers had ASD and the consequences of this diagnosis for their own daily life
appeared as an important theme in participants’
stories. When they realize that their brother or sister always will be different, siblings have no other
choice than accepting ASD. This acceptance process can be conceptualized as three stages: in the
first stage siblings swallow the message, in the second stage they are going along with it, and in the
third stage siblings resign themselves to their special situation and even begin to consider it as
“normal.”
When I was told Don has ASD, I first felt
displeased. I don’t know—it took a week or
two to get used to it—so I felt displeased for
one day I think. Perhaps displeased is kind of
rude to say about Don, but in every way I
needed to get used to it. (Roy, 14 years)
We have to accept it, otherwise you can’t live
with it. (Sophia, 11 years)
You must accept it, because you can’t send
him back, can you? (Monica, 9 years)
My brother can’t get me mad anymore because now I’m used to the things he says to
me. My parents told me he doesn’t mean
what he’s saying and anyway it has improved.
Where he first said: I hate you, he now only
says: you’re a silly moo! (Rebecca, 14 years)
However, accepting ASD also implies that there
will be moments, days, or even weeks where this
will seem very hard or even impossible.
I regularly go to my bedroom, because I can’t
bear it anymore, and then I just start to cry
and cry and then I think: Why is my brother
like that? It is so difficult, and then realizing
that he will always be like that makes it even
worse. . . . I often fall asleep on a wet pillow.
(Guido, 11 years)
Domain 7: Exchanging Experiences. It is important for siblings of children with ASD to meet
others with the same experience. By listening to
the stories of other siblings, by sharing experiences, by getting information about ASD, and
also by having fun with each other, siblings can
better understand their own story. It helps them
to accept their situation and at the same time to
put things into perspective.
I like to go to the sibling group, because
there I can enjoy myself, without children
with ASD. (Monica, 9 years)
Once I attended a meeting especially for siblings of children with ASD. We could ask
questions or tell our own history. It was nice
to meet other people experiencing the same
things, or even worse. There was a sibling
telling about her sister who smeared her feces
all over the wall! So I considered myself fortunate with my situation! (Rebecca, 14 years)
Domain 8: Social Support. Participants indicated that they also needed support and help.
Children expect, first, that their parents will listen
to them; although they acknowledge that their
brother might need more attention, they expect
their parents to treat all the children in the family
equally:
It would be easier for me if my parents gave
me some more attention, because now they
are always busy with Thomas. (Monica, 9
years)
Many participants were aware that their parents had their own concerns, and often did not
want to bother their parents with their worries.
Some participants in our study considered having
a typically developing brother or sister (in addition to the sibling with ASD) an additional resource. With this sibling they could do the things
they could not do with their brother with ASD:
It would definitely be better if I had another
sibling—a brother or a sister, it doesn’t matter, but just being able to do the normal
things! (Guido, 11 years)
49
On the other hand, not all siblings of children with ASD idealize the “normal” sibling relationship.
At school nobody knows he has ASD. He
can hide it and therefore nobody needs to
know. (Sophia, 11 years)
If I had a normal brother or sister too, I
think things would be worse, because I
would get along better with the normal one
and Michael might feel excluded. After all,
he can’t help it, and how would it be for him
noticing that I preferred the other one? (Rebecca, 14 years)
On the other hand, when the child with
ASD displays typical behaviors, it can be very difficult for the sibling to answer the questions of
the outside world—or not to react to comments
and to keep the family’s secret.
Other relatives can also be a support for siblings, particularly if they are willing to take care of
the brother or sister with ASD, both to satisfy the
need for private time and also to spend some oneon-one time with the child without ASD. However, sometimes other family members do not
believe or cannot accept that the child has ASD.
Another problem arises when family members do
not realize the impact of the child with ASD on
the family. Because of the invisibility of ASD,
some family members might think that living
with a child with ASD turns out better than expected, so they do not offer their support spontaneously. Similarly, parents and/or siblings would
rather not ask for help, creating a cycle of not offering help because parents do not ask for it,
probably because there is no need, therefore, there
is no need to offer support. . . . Unfortunately,
families with a child with ASD, and more specifically the siblings of the child with ASD, cannot
expect support from their extended family.
Finally, friends are also important for siblings, simply because friends can help them “forget” that they have a sibling with ASD.
I’m allowed to go to my friends or my
friends can come over here, and that’s important, because sometimes you just want to
leave the quarrelling or your annoying
brother. You want to be somewhere else, and
then it’s good to have your friends. (Rebecca,
14 years)
Domain 9: Dealing With the Outside World.
Because of the invisibility of ASD, the outside
world (i.e., friends, neighbors) often does not
know (or is not allowed to know) that the child
has ASD. Participants in our study appreciated
the fact that the outside world was not always
aware of their family situation.
On the playground I hear the other children
refer to my brother as just an annoying boy.
Of course I know better, but I’m not allowed
to explain. (Luke, 11 years)
If the outside world knows about the ASD,
however, this can provide another resource for
siblings to get support or to be acknowledged.
Sometimes our neighbor invites me to come
to her house, where I can play with her
daughter, because she knows I cannot really
play with my brother Brian. (Claire, 6 years)
This resource is dependent, of course, on the outside world understanding and accepting ASD as
well. Siblings can face teasing and disbelief, and
often have to defend themselves and their brother
or sister.
One day a friend came over to play with me
on the computer, but once he saw my
brother was at home too, my friend said that
he had to go home. (Luke, 11 years)
DISCUSSION
The principal goal of this study was to investigate
how siblings of children with ASD perceived their
quality of life as a sibling. The participants in this
study could indeed describe their experiences and
reflect on their quality of life and how it might be
improved. This is in line with other studies exploring the perceptions and experiences of siblings of children with ASD (Benderix et al., 2006;
Mascha & Boucher, 2006; Petalas, Hastings,
Nash, Dowey et al., 2009). The voice of siblings
has been neglected for a long time; our study confirms the surplus value of listening to the siblings,
even when they are rather young.
50
Fall 2011
DEFINING SIBLING QUALIT Y
OF
LIFE
Based upon the stories of the participants in our
study, we were able to define nine domains of
SibQol. These nine domains are partially consistent with the findings of other studies on the sibling experience (Benderix et al., 2006; Petalas,
Hastings, Nash, Dowy et al., 2009). Previous research presented conflicting results about the
detrimental and the beneficial effects of having a
brother or sister with ASD; our study also shows
that the positive and the negative experiences are
inextricably linked to the sibling relationship. The
value of the SibQol concept is that it takes this
dynamic character into account. Despite the
holistic nature of the sibling’s experience, it is
much easier to address specific aspects (i.e., domains of quality of life) in isolation. The multidimensional characteristic of the QOL concept
suggests that different domains can be viewed not
only separately but also as part of a whole (Brown
& Brown, 2003; Schalock, 2004; Turnbull et al.,
2004).
In their study on the perceptions and experiences of siblings of children with ASD, Petalas,
Hastings, Nash, Dowey et al. (2009) and Benderix et al. (2006) identified collectively 12 main
themes representing the sibling’s experience. Each
of these is reflected in our SibQol concept, although the SibQol concept is much more comprehensive, capturing the sibling experience as a
whole.
Our study also shows that the
positive and the negative experiences
are inextricably linked to the
sibling relationship.
The nine domains discussed in this study can
only be considered a preliminary definition of
SibQol. Further research is needed to refine this
concept, to define subdomains, and to describe
indicators. The final definition of the SibQol concept should enhance development of sibling support programs. Although during the last 2
decades sibling research has emphasized the importance of sibling support (Evans, Jones, &
Mansell, 2001; Lobato & Kao, 2005; Smith &
Perry, 2004), due to the lack of insight into the
sibling experience it has not been clear which
needs these programs would support. The SibQol
concept not only gives us more insight into the
sibling experiences, but gives us a concrete basis
from which to develop and implement sibling
support and thus to improve the quality of life of
siblings.
“I N V I S I B L E ” D I S A B I L I T I E S
This study also illustrates how the invisibility of
ASD—the “normal” physical appearance and
“normal” behavior—strongly influences the experience of siblings of children with ASD. This invisibility can cause siblings, and also the outside
world, to have a lack of understanding and doubt
about the diagnosis. On the other hand, this invisibility also brings relief because sometimes everything seems to be “normal.”
Research on other invisible disabilities or diseases has shown that people often assume that because people with invisible disabilities may look
fine on the outside, they must be exaggerating,
making excuses, or lying (Connell & Connell,
2004). The results of our study confirm that
sometimes other people cannot believe that the
child has ASD, because he or she looks “normal”
and behaves “normally.” This is similar to Skär’s
(2010) findings on children’s conceptions of the
word disabled: Children have positive attitudes towards people with disabilities, but they also associate disability primarily with some technical
device (e.g., a wheelchair or crutches). Children
respond to an obvious disability positively and to
an invisible disability with prejudice, doubt, and
incomprehension (Skär, 2010).
Siblings can “prove” and explain ASD only if
the child is exhibiting typical ASD behavior,
which sometimes helps them to appreciate the
child. Chambres, Auxiette, Vansingle, and Gil
(2008) and Huws and Jones (2010) examined
concepts of autism and attitudes towards people
with ASD. Their results showed that when people do not know that a child has ASD, they
judge typical ASD behaviors as more annoying.
In contrast, when people are informed about
ASD, they are more lenient. This also confirms
the results of Peeters’s study (1997, as cited in
Chambres et al., 2008), in which parents experi51
enced daily comments suggesting that their children were poorly raised. Nevertheless, these results do not mean that it is better for parents and
siblings to tell everybody about the presence of
ASD. The word autism seems to lower people’s
expectations of the child (Chambres et al., 2008;
Connors & Stalker, 2007). Research has also
shown that providing extra information about
ASD is not in itself sufficient in restructuring attitudes towards people with ASD or perceptions
about ASD. Direct contact and interactions between people with and without ASD over long
periods has been shown to be the only effective
way of developing positive concepts (Chambres
et al., 2008).
Our research also highlights the sibling’s
dilemma about being allowed to tell others. One
might think that the combination of telling, explaining, and doing as much as possible with the
child with ASD is a good approach for friends
and peers. However, research has shown that children hold less positive attitudes towards a child
who exhibits typical ASD behaviors after being
told about the presence of ASD (Swaim & Morgan, 2001, as cited in Huws & Jones, 2010).
Maras (1993, as cited in Chambres et al., 2008)
showed that, in school settings, children between
5 and 11 years old prefer to play with typically
developing peers rather than their peers with disabilities. The dilemma about whether or not to
keep silent about ASD causes a lot of stress and
tension for siblings of children with ASD. If the
outside world is not informed or is not allowed to
be informed, the siblings cannot be acknowledged. Families need to continually reevaluate the
advantages and disadvantages of reporting or not
reporting; regardless of their decision, it is important that siblings feel supported during this process and when facing the consequences of the
family’s decision.
Our study, in line with other research studying the sibling relationships of children with
ASD, indicates that siblings recognize the advantages of some typical ASD behaviors. Taunt &
Hastings (2002, as cited in Petalas, Hastings,
Nash, Dowey et al. 2009) found that siblings’
positive perceptions may serve a functional role in
adapting to growing up with a brother or sister
with ASD. Research on the acceptance process of
siblings of children with ASD has described this
reframing as a part of the acceptance process.
When siblings realize that their brother or sister is
different and always will be different, they not
only adjust to it, but after a while experience their
situation as normal and take advantage of it
(Moyson & Roeyers, 2011).
Siblings’ positive perceptions may
serve a functional role in adapting
to growing up with a brother
or sister with ASD.
Even when recognizing the advantages of the
invisibility of ASD and the occasional benefits of
certain typical ASD behaviors, one also must be
aware of the disadvantages. Because of the invisibility of the disability, siblings are not always recognized as having a “special” brother or sister.
Further, our study shows that siblings themselves
are inclined to minimize the impact of ASD on
their own lives. Because they have no other choice
than to adjust to their specific situation, siblings
not only learn to consider their situation as normal but also to refuse themselves permission to
complain.
L I M I TAT I O N S
OF THE
STUDY
The participants in this study were young siblings; we could only approach and contact them
through their parents. Consequently we are aware
of the preselection of our participants and the impact of this on the results. In addition, all the siblings belonged to families with medium or high
socioeconomic status. Other studies have shown
the relationship between the socioeconomic status
of the family and siblings’ adjustment (Giallo &
Gavidia-Payne, 2006; Powell & Ogle, 1985). We
are aware of the influence of this fact on the results of our study and it remains a challenge to expand this type of study to include families of
lower socioeconomic status.
By coincidence, all the siblings in this study
had a brother with ASD. Given the male-to-female ratio of ASD reported in the literature,
there are more boys than girls with ASD. Nevertheless it is not inconceivable that our results are
influenced by this gender factor. It is also impor-
52
Fall 2011
tant to note that this study was carried out in
Flanders (Dutch-speaking part of Belgium). We
are aware of the potential differences with sibling
responses in other cultures, and recommend future research on sibling quality of life in other
countries.
I M P L I C AT I O N S F O R R E S E A R C H
PRACTICE
AND
Despite its limitations, the current study has important implications for further research and for
the organization and development of family and
sibling support services. In refining this first conceptualization of SibQol, it would be useful to repeat this study with siblings of children with
another disability, such as intellectual or physical
disabilities. Because of the specific characteristics
of those disabilities we can assume that siblings
will define their quality of life differently. For this
reason, we also recommended extending this
study to older siblings; individuals at different
ages perceive different aspects as important in
terms of a good quality of life.
Once the concept of SibQol—an essential
part of and an addition to the FQOL concept—is
developed definitively, it can be used to help respond to the needs of siblings of children with
disabilities. Further research needs to show
whether and how this concept can be used by
family support services.
More research is also needed to explore the
potential function of positive perceptions as a
process variable affecting the siblings’ adjustment.
The participants in our study could describe their
experience of being a sibling of a child with ASD.
Not only more qualitative but also longitudinal
research is needed to gain more insight into the
sibling experience.
Social workers, psychologists, teachers, clinicians, and all other professionals working with
families of children with ASD need to recognize
the sibling’s unique experience and at least make
this position visible. Family support can only be
successful if all family members, including siblings, receive the support they need and deserve.
REFERENCES
American Psychiatric Association. (2000). Diagnostic
and Statistical Manual for Mental Disorders (4th ed.).
Washington, DC: Author.
Barr, J., McLeod, S., & Daniel, G. (2008). Siblings of
children with speech impairment: Cavalry on the hill.
Language, Speech and Hearing Services in Schools, 39,
21–32. doi:10.1044/0161-1461(2008/003)
Benderix, Y., Nordstrom, B., & Sivberg, B. (2006).
Parents’ experience of having a child with autism and
learning disabilities living in a group home. A case
study. Autism, 10, 629–641. doi:10.1177
/1362361307070902
Benson, P. R., & Karlof, K. L. (2008). Child, parent,
and family predictors of later adjustment in siblings of
children with autism. Research in Autism Spectrum Disorders, 2, 583–600. doi:10.1016/j.rasd.2007.12.002
Brown, I., Anand, S., Fung, A. W. L., Isaacs, B. J., &
Baum, N. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15, 207–230.
doi:10.1023/A:1024931022773
Brown, I., & Brown, R. I. (2003). Quality of life and
disability. London, England, and New York, NY: Jessica
Kingsley.
Chambres, P., Auxiette, C., Vansingle, C., & Gil, S.
(2008). Adult attitudes toward behaviors of a six-yearold boy with autism. Journal of Autism and Developmental Disorders, 38, 1320–1327. doi:10.1007
/s10803-007-0519-5
Connell, W., & Connell, S.. (2004). But you LOOK
good: A guide to understanding and encouraging people
living with chronic illness and pain. Parker, CO: Invisible Disabilities Association.
Connors, C., & Stalker, K. (2007). Children’s experiences of disability: Pointers to a social model of childhood disability. Disability & Society, 22, 19–33.
doi:10.1080/09687590601056162
Corbin, J., & Strauss, A. (2008). Basics of qualitative research (3rd ed.). Thousand Oaks, CA: Sage.
Creswell, J. W. (2007). Qualitative inquiry & research
design: Choosing among five approaches (2nd ed.). Thousand Oaks, CA: Sage.
Cuskelly, M., & Gunn, P. (2006). Adjustment of children who have a sibling with Down syndrome: Perspectives of mothers, fathers and children. Journal of
Intellectual Disability Research, 50, 917–925. doi:10
.1111/j.1365-2788.2006.00922.x
Evans, J., Jones, J., & Mansell, I. (2001). Supporting
siblings: Evaluation of support groups for brothers and
53
sisters of children with learning disabilities and challenging behavior. Journal of Learning Disabilities, 5,
69–78.
Giallo, R., & Gavidia-Payne, S. (2006). Child, parent
and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual
Disability Research, 50, 937–948. doi:10.1111/j.1365
-2788.2006.00928.x
Hastings, R. P. (2003a). Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The
moderating role of social support. Journal of Autism and
Developmental Disorders, 33, 141–150. doi:10.1023
/A:1022983209004
Hastings, R. P. (2003b). Brief report: Behavioral adjustment of siblings of children with autism. Journal of
Autism & Developmental Disorders, 33, 99–104.
doi:10.1023/A:1022290723442
Macks, R. J., & Reeve, R. E. (2007). The adjustment
of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37,
1060–1067. http://dx.doi.org/10.1007/s10803-006
-0249-0
Mascha, K., & Boucher, J. (2006). Preliminary investigation of a qualitative method of examining siblings’
experiences of living with a child with ASD. British
Journal of Developmental Disabilities, 52, 19–28.
Meadan, H., Stoner, J. B., & Angell, M. E. (2010). Review of literature related to the social, emotional, and
behavioral adjustment of siblings of individuals with
autism spectrum disorder. Journal of Developmental and
Physical Disabilities, 22, 83–100. doi:10.1007/s10882
-009-9171-7
Miles, M. B., & Huberman, A. M. (1994). Qualitative
data analysis, an expanded sourcebook (2nd ed.). London, England: Sage.
Hastings, R. P. (2007). Longitudinal relationships between sibling behavioral adjustment and behavior
problems of children with developmental disabilities.
Journal of Autism and Developmental Disorders, 37,
1485–1492. doi:10.1007/s10803-006-0230-y
Moyson, T., & Roeyers, H. (2011). “It’s like the story of
Santa Claus: when I was told he doesn’t exist, I had to accept it too.” A qualitative examination of the process of accepting that your brother or sister has a disability.
Manuscript submitted for publication.
Houtzager, B. A., Grootenhuis, M. A., Caron, H. N.,
& Last, B. F. (2005). Sibling self-report, parental proxies and quality of life: The importance of multiple
informants for siblings of a critically ill child. Pediatric
Hematology and Oncology, 22, 25–40. doi:10.1080
/08880010590896233
Petalas, M. A., Hastings, R. P., Nash, S., Dowey, A., &
Reilly, D. (2009). “I like that he always shows who he
is”: The perceptions and experiences of siblings with a
brother with autism spectrum disorder. International
Journal of Disability Development and Education, 56,
381–399. doi:10.1080/10349120903306715
Huws, J. C., & Jones, R. S. P. (2010). They just seem
to live their lives in their own little world: Lay perceptions of autism. Disability & Society, 25, 331–344.
doi:10.1080/09687591003701231
Petalas, M. A., Hastings, R. P., Nash, S., Lloyd, T., &
Dowey, A. (2009). Emotional and behavioral adjustment in siblings of children with intellectual disability
with and without autism. Autism, 13, 471–483. doi:
10.1177/1362361309335721
Jokinen, N. S., & Brown, R. I. (2005). Family quality
of life from the perspective of older parents. Journal of
Intellectual Disability Research, 49, 789–793.
doi:10.1111/j.1365-2788.2005.00753.x
Kaminsky, L., & Dewey, D. (2001). Siblings relationships of children with autism. Journal of Autism & Developmental Disorders, 31, 399–410. doi:10.1023
/A:1010664603039
Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tur, V.,
& Shalev, R. S. (2004). Social and emotional adjustment of siblings with children with autism. Journal of
Child Psychology and Psychiatry, 45, 855–865.
Powell, T., & Ogle, P. (1985). Brothers and sisters—A
special part of exceptional families. Baltimore, MD:
Brookes.
Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of
Child Psychology and Psychiatry and Allied Disciplines,
43, 225–232. http://dx.doi.org/10.1111/1469-7610
.00015
Rao, P. A., & Beidel, D. C. (2009). The impact of
children with high-functioning autism on parental
stress, sibling adjustment, and family functioning.
Behavior Modification, 33, 437–451. doi:10.1177
/0145445509336427
Lobato, D. J., & Kao, B. T. (2005). Brief report: Family-based group intervention for young siblings of children with chronic illness and developmental disability.
Journal of Pediatric Psychology, 30, 678–682. http://
dx.doi.org/10.1093/jpepsy/jsi054
Rivers, J. W., & Stoneman, Z. (2008). Child temperaments, differential parenting, and the sibling relationships of children with autism spectrum disorder.
Journal of Autism and Developmental Disorders, 38,
1740–1750. doi:10.1007/s10803-008-0560-z
54
Fall 2011
Ross, P., & Cuskelly, M. (2006). Adjustment, sibling
problems and coping strategies of brothers and sisters
of children with autistic spectrum disorder. Journal of
Intellectual and Developmental Disability, 31, 77–86.
http://dx.doi.org/10.1080/13668250600710864
Schalock, R. (2004). The concept of quality of life:
What we know and do not know. Journal of Intellectual
Disability Research, 48, 203–216. http://dx.doi.org
/10.1111/j.1365-2788.2003.00558.x
Seidman, I. (2006). Interviewing as qualitative research,
a guide for researchers in education and the social sciences
(3rd ed.). New York, NY: Teachers College Press.
Skär, L. (2010). Children’s conceptions of the word
“disabled”: A phenomenographic study. Disability and
Society, 25, 177–189.
Smith, T., & Perry, A. (2004). A sibling support group
for brothers and sisters of children with autism. Journal
on Developmental Disabilities, 11, 77–88.
Turnbull, A. P., Brown, I., & Turnbull, R. (2004).
Families and persons with mental retardation and quality
of life: International perspectives. Washington, DC:
American Association on Mental Retardation (AAMR).
Verté, S., Roeyers, H., & Buysse, A. (2003). Behavioral
problems, social competence and self-concept in siblings of children with autism. Child Care Health and
Development, 29, 193–205. http://dx.doi.org/10.1046/j
.1365-2214.2003.00331.x
ABOUT THE AUTHORS
TINNEKE MOYSON , PhD, Academic Staff
Member; and HERBERT ROEYERS, Professor,
Faculty of Psychology and Educational Sciences,
Ghent University, Belgium.
Correspondence concerning this article should be
addressed to Tinneke Moyson, Department of
Experimental Clinical and Health Psychology,
Henri Dunantlaan 2, B-9000 Ghent, Belgium
(e-mail: Tinneke.moyson@ugent.be).
The authors wish to thank the participants for
their heart-to-heart talks, and extend their thanks
also to the parents for their hospitality.
This research was supported by the Special
Research Fund (BOF) of Ghent University, Belgium. The opinions expressed do not necessarily
reflect the position or policy of the BOF, and no
official endorsement should be inferred.
Manuscript submitted August 2010; accepted
March 2011.
55

Exceptional Children

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