I Like That He Always Shows Who He Is: The perceptions and experiences of siblings with a brother with autism spectrum disorder.

I Like That He Always Shows Who He Is: The perceptions and experiences of siblings with a brother with autism spectrum disorder.
Please summarized the article and then critique the phenomenology approach that used and the data analysis the strengths and weaknesses, and take a reflective stance on how the applied study moderates the student’s understanding of the chosen tradition.
Focus on the methodology to critique.

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International Journal of Disability, Development and
Education
ISSN: 1034-912X (Print) 1465-346X (Online) Journal homepage: http://www.tandfonline.com/loi/cijd20
“I Like That He Always Shows Who He Is”: The
perceptions and experiences of siblings with a
brother with autism spectrum disorder
Michael A. Petalas , Richard P. Hastings , Susie Nash , Alan Dowey & Deirdre
Reilly
To cite this article: Michael A. Petalas , Richard P. Hastings , Susie Nash , Alan Dowey & Deirdre
Reilly (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, 56:4, 381-399, DOI: 10.1080/10349120903306715
To link to this article: http://dx.doi.org/10.1080/10349120903306715
Published online: 13 Nov 2009.
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International Journal of Disability, Development and Education
Vol. 56, No. 4, November 2009, 381–399
ISSN 1034-912X print/ISSN 1465-346X online
© 2009 Taylor & Francis
DOI: 10.1080/10349120903306715
http://www.informaworld.com
“I Like That He Always Shows Who He Is”: The perceptions
and experiences of siblings with a brother with autism
spectrum disorder
Michael A. Petalas*a, Richard P. Hastingsa, Susie Nasha, Alan Doweyab, and Deirdre
Reillya
aSchool of Psychology, Bangor University, Bangor, UK; bWrexham Child Health Centre,
Wrexham, UK
I01245TCOMn06aIrt.i.J03iyeAc1gD049rlh0io.n-0naP8r9a0eaA e0t1a&l2lit/P 2noa01A Xle4dnF0atr3 ar93sa Ft(la0i@l4 prcna8Ja9lrsoc4leni1iiun5vcs2rt.ie)0nss/rg9a1pml04o 3o6o3f5l .0D-a36ci47.su6a1kbX5i l(iotyn,l iDnev) elopment and Education
Semi-structured interviews were used to explore the perceptions and experiences of
eight typically developing siblings in middle childhood who had a brother with autism
spectrum disorder (ASD). The interviews were analysed using interpretative
phenomenological analysis (IPA). The analysis yielded five main themes: (i) siblings’
perceptions of the impact of their brother’s condition on their lives, (ii) siblings’
perceptions of the attitudes of others, (iii) siblings’ tolerance and acceptance towards
their brothers, (iv) positive attitudes and experiences, and (v) siblings’ views on support
for themselves and their brothers. These exploratory findings can be used to inform
future larger scale studies and quantitative research. Initial implications for practice
focus on issues related to enhancing the development of support services for siblings of
children with ASD.
Keywords: autism; Asperger’s syndrome; families; qualitative research; siblings
Introduction
Parents of children with autism spectrum disorder (ASD) often report increased stress
compared to parents of children with another disability or typically developing children
(Abbeduto et al., 2004; Duarte, Bordin, Yazigi, & Mooney, 2005; Hastings, Daley, Burns,
& Beck 2006; Herring et al., 2006; Koegel et al., 1992; Rodrigue, Morgan, & Geffken,
1990; Weiss, 2002). Hence, there has been interest in whether some siblings in a family
environment that includes a child with ASD, and possibly a parent under considerable
stress, might also be at risk for adjustment difficulties.
In terms of how siblings adjust to living and growing up with a brother or sister with
autism, there are mixed findings. Some researchers report that children with a brother or
sister with autism are at a higher risk for internalising and externalising behaviour problems
(Fisman et al., 1996; Fisman, Wolf, Ellison, & Freeman, 2000; Gold, 1993; Hastings,
2003a; Rodrigue, Geffken, & Morgan, 1993; Ross & Cuskelly, 2006; Verte, Royers, &
Buysse, 2003; Wolf, Fisman, Ellison, & Freeman, 1998) and for impoverished sibling and
peer relationships (Bägenholm & Gillberg, 1991; Hastings 2003a; Kaminsky & Dewey,
2001) compared to siblings of children with another disability or typically developing children.
Other researchers suggest that siblings of children with autism may not be at increased
risk for such difficulties (Hastings 2007; Kaminsky & Dewey, 2002; Mates, 1990;
Pilowsky, 2004). Furthermore, in a number of studies positive outcomes have been
*Corresponding author. Email: [email protected]
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382 M. A. Petalas et al.
reported, such as better sibling emotional and behavioural adjustment (Hastings, 2003b),
more positive perceptions of sibling relationships with their brothers and sisters with autism
(Royers & Mycke, 1995), and higher social competence (Ferrari, 1984) and self-concept
(Macks & Reeve, 2007), when compared to siblings of children with another disability or
with normative data.
Research focusing on siblings has generally started with research questions that explicitly
or implicitly assume that growing up with a brother or sister with ASD is a stressful
experience that can lead to emotional and behavioural difficulties. Not only is the evidence
contradictory, but respondents in research are typically parents reporting on siblings’
adjustment rather than the siblings themselves. Siblings’ personal accounts of their circumstances
might reflect aspects of their appraisal process that form an integral component of
their coping efforts (Lazarus & Folkman, 1984). McHale, Sloan, and Simeonson (1986),
interviewed 30 siblings of children with autism, 30 siblings of children with an intellectual
disability and 30 siblings of typically developing children aged between 6- and 15-yearsold,
about their sibling relationships and their perceptions of their siblings. Overall, reports
from all three groups were positive. Data from individual children, however, revealed that
while some children expressed positive views of their siblings with a disability, others
described their relationships in very negative terms. In the groups of siblings of children
with autism and with intellectual disability, negative sibling relationships were associated
with worries about the future of the child with a disability, perceived parental favouritism
and feelings of rejection toward the child with a disability. On the other hand, siblings’
greater understanding of their brother’s or sister’s disability, and perceived positive
reactions from parents and peers towards the child with a disability, were related to more
positive sibling relationships.
In a replication of the McHale et al. study, Bägenholm and Gillberg (1991) interviewed
20 siblings of children with autism, 20 siblings of children with intellectual disability and
20 siblings of typically developing children between the ages of five and 20-years, using
the same semi-structured interview format with the added domain of siblings’ self-perceptions.
All three groups of siblings expressed positive views, but siblings of children with
autism were relatively more negative in their accounts of their relationships, reported more
problems with their siblings’ behaviour, and expressed greater concerns for their siblings’
future. These children also reported feeling more lonely than siblings of children with
intellectual disability and typically developing children.
These studies using sibling self-reports derived quantitative data from semi-structured
interviews. It was not their aim to provide the detail and wealth of information that can be
found in verbatim interview data (Smith, Harre, & Langenhove, 1995). Qualitative research
methods allow the researcher to focus on issues that are meaningful to the participants,
without the constraints of predetermined categories, therefore allowing for the emergence
of different perspectives (Barbour, 2000). Given the diversity of perceptions and adjustment
of siblings of children with ASD, these aspects of the siblings’ experience lend themselves
to exploration via qualitative methods. In one of the few recent qualitative studies on
the experiences of siblings of children with autism, Benderix and Sivberg (2007) conducted
face-to-face interviews with 14 siblings aged between 5- and 29-years-old from five families.
The interview transcripts were analysed via content analysis (Burnard, 1991) and
yielded seven categories of siblings’ experiences: (i) having a sense of responsibility, (ii)
feeling sorry for their sibling with autism, (iii) dealing with abnormal behaviour, (iv) feeling
empathy for their sibling with autism, (v) expressing hope and anticipating relief
through respite, (vi) experiencing violent behaviour, and (vii) a negative impact on
siblings’ peer relationships. Also using content analysis, Mascha and Boucher (2006)
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Siblings with a Brother with ASD 383
interviewed 14 siblings between the ages of 11- and 18-years using a semi-structured
format. In general, these siblings’ reports were positive. Where there were negative reactions,
these related to the behaviour problems of the child with autism and feelings of
embarrassment in the typically developing siblings.
In an earlier qualitative investigation, Dellve and colleagues (2000) interviewed 15
sisters between the ages of 12- and 18-years who had a brother with deficits in attention
motor control and perception (DAMP) and/or Asperger’s syndrome. The analysis of the
data was performed via a constant comparative method for grounded theory (Glaser &
Strauss, 1991). These authors found that where siblings possessed increased knowledge and
understanding of their brother’s disability this was associated with less embarrassment in
relation to the child with a disability and greater acceptance of their circumstances. Some
siblings described a marked sense of responsibility and striving for a close relationship with
their brothers, while others were attempting to distance themselves from the family and
gain independence.
There is a dearth of siblings’ accounts of their experiences in families where there is a
child with ASD. Existing samples either span the childhood and adolescent years in toto ,
or focus on adolescent siblings exclusively. Minimal research attention has been paid to the
experiences of siblings of children with ASD in middle childhood and preadolescence. In
a home observational study, child siblings of children with ASD spent on average 40
minutes out of every hour in mutual interaction (Knott, Lewis, & Williams, 1995). At this
stage, siblings are an important part of each other’s emotional support network (Harris &
Glasberg, 2003) and sibling conflict may increase (Kim, McHale, Wayne, & Crouter,
2006). This is also the time when the sibling relationship becomes more egalitarian
(Buhrmester & Furman, 1990; Dunn, 1992) and has been shown to predict stability of relationship
quality longitudinally between siblings (McHale, Kim, & Whiteman, 2006), as
well as with peers (Updegraff, McHale, & Crouter, 2002). The conflicting research findings
on sibling well-being (Orsmond & Seltzer, 2007), scarcity of information directly from
siblings and lack of clarity regarding how siblings experience life as children in a family
with a child with ASD, give grounds for employing a qualitative method of analysis that
captures detailed accounts of siblings’ subjective experiences. Therefore, the aim of the
present study was to investigate, using a qualitative method based on phenomenology, the
perceptions and lived experiences of typically developing siblings, in middle childhood,
who were growing up with a brother with ASD.
Method
Methodological Approach
Interpretative phenomenological analysis (IPA: Smith, Jarman, & Osborn, 1999) was the
chosen method of analysis in this investigation. IPA deliberately seeks to capture the richness
and diversity of participants’ accounts by uncovering the central themes that emerge
from the participant’s talk (Jarett, Payne, Turner, & Hillier, 1999). In this respect, the
participant is seen as an expert on his or her personal experience. Herein, IPA is used to
capture the experience of siblinghood where there is a child with ASD as it is understood
by the typically developing sibling.
In addition to the meaning offered by the participants’ accounts, IPA recognises the
dual aspect of analysis as the investigator also engages in an interpretative relationship with
the interview data. Direct access to the personal meaning offered by the participant is not
achievable without acknowledging the influence of the researcher’s personal conceptions;
this interpretative activity is therefore a necessary component in IPA (Smith et al., 1999).
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384 M. A. Petalas et al.
IPA methodology typically involves small (N typically = 6 – 8), somewhat homogenous
samples, which allows for in depth examination of participants’ accounts, although samples
have varied from single case studies to 30 participants (Brocki & Wearden, 2006). Additional
researchers are often involved in credibility checks to ensure that the emerging
themes are internally coherent and grounded in the transcripts (Elliott, Fisher, & Rennie,
1999). Furthermore, treatments such as seeking consultation from the participants on the
accuracy of the findings, discussion within the research team, peer review and the use of
reflective practice via a reflexive journal (Smith, 2003) can also be utilised to aid verification
and consistency, and ensure the quality of the findings (Carradice, Shankland, & Beail,
2002). The data interpretation in this study was facilitated by group discussions within the
research team, and a credibility check of themes conducted by a co-author.
Participants
The participant recruitment process was facilitated by a local parent group, a local school
for pupils with ASD, a local branch of a national disability charity, and also through advertisement
in a local newspaper and the UK National Autistic Society (NAS) web site. The
inclusion criteria for the study were that there was a child in the family with a formal diagnosis
of ASD between five and 17-years-of-age and a typically developing sibling between
the ages of eight and 17-years, and families resided in or around the area local to the University
of Bangor. Families were asked to volunteer to participate. Twenty-two siblings with
a brother with ASD who met the inclusion criteria for the study were interviewed. The
present study reports on a subsample of eight biological siblings with a brother with ASD,
who were selected based on the children’s age (middle childhood age 9–12 years; M =
11.19 years, SD = 1.32). There were three brothers and five sisters of males with ASD.
Three siblings were younger, four were older and one was a twin of the child with ASD.
Two children, one male, one female, were biological siblings, from the same household,
with a brother with Asperger’s syndrome. All of the siblings interviewed in the research
were aware of their brother’s diagnosis. The number of children in the participants’ homes
ranged from two to five (M = 2.87; SD = .83; mode = 3). The ages of the boys with ASD
ranged from eight to 17-years (M = 11.99 years, SD = 2.83). Three boys had a diagnosis of
ASD with associated intellectual disability and five boys had a diagnosis of Asperger’s
syndrome. Apart from one child with ASD who had an additional diagnosis of ADHD, the
rest of children did not have any comorbid neurological or psychiatric diagnoses. Seven
boys with ASD lived in the family home, while one child with ASD was living away from
home.
Instrument
The semi-structured interview was developed through multiple discussions with the
research team about the items and structure of the interview schedule. The interview schedule
was first piloted with one sibling whose interview is not included in this analysis. The
pilot interview resulted in some minor changes to the interview format. A number of items
were omitted (e.g. “Can you catch autism from someone else?”), one item was added
(“What advice would you give to other brothers/sisters of siblings with autism?”) and the
interview was organised into two main areas described below. The interview schedule
included a number of warm-up questions aiming to put the participant at ease before
moving on to the substantive areas, as well as subsidiary questions and prompts should a
sibling have difficulty discussing a particular topic. The two main areas covered by the
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Siblings with a Brother with ASD 385
interview schedule were: (1) siblings’ knowledge and perception of their brother’s ASD
(for example, “How would you describe autism to someone who had never heard it
before?” “How would things be different for [name of brother with ASD] if he/she didn’t
have autism?”), and (2) siblings’ perceptions and experiences of their relationships with
their brothers with ASD (for example, “Tell me what it’s like to be ____’s brother/ sister?”
“What advice would you give to other brothers/sisters of siblings with autism?”).
Procedure
Ethical approval was granted by the University of Bangor Ethics Committee prior to
commencing the participant recruitment process. Written consent was obtained from the
parent(s), verbal consent was obtained from the participating sibling prior to commencing
the interview, and where applicable the child with ASD was also asked to consent to their
personal information being discussed between the researcher and their typically developing
brother/sister. Information on the aims of the research and the potential topics that would
be discussed during the interview was provided via an information sheet (including a childfriendly
version) linked to the consent form, which the participating families received a
number of days prior to the interview. During the interview, the participant was allowed to
lead the discussion. At the end of the process participants were given the opportunity to
provide their feedback, including thoughts and feelings, about the interview process, and
raise any additional topics. Participants were given the choice of being interviewed in their
home (n = 7), or at the researcher’s base (n = 1). Interviews were conducted face-to-face
and on average lasted 21 minutes (range 14.13–42.51 mins). The transcripts of the interviews
amounted to 70 single-spaced pages of data. All participants reported positively on
the interview experience and none requested that the interview be terminated prematurely.
A copy of the interview schedule is available from the corresponding author.
Data Analysis
Each interview was audio-recorded and subsequently fully transcribed. Initially, the first
author listened to and read through the transcript a number of times to become familiar
with the interview content. Following this, the transcripts were read line-by-line noting
comments (e.g., preliminary interpretations, summaries of meaning) on the left hand side
of the transcript. The transcripts were reread and themes emerging from the data were
noted on the right hand side of the transcript until the interviewer was satisfied that all
relevant data had been extracted from the transcript. This process was then repeated for
each transcript. An initial list of themes relating to the siblings’ experiences was drawn up
by grouping comments that clustered together, and a list of relevant verbatim quotes
corresponding to these themes was created using a spreadsheet programme. The emerging
themes were grouped together and a master list of themes was developed. The credibility
check and the process for validating and themes involved a co-author reading each
transcript, the list of themes and quotes, and the master list of themes, to ensure that the
themes in the master list were grounded in the data and none had been omitted. Discussion
among the authors resulted in minor changes to the presentation and description of
the themes. A final master list of five themes emerged through this process, by collapsing
themes across the various sets. The themes are discussed below and illustrated with verbatim
quotes from the interviews. For purposes of confidentiality, all names have been
changed. When providing extracts from the interviews “…” is used to indicate words
omitted to shorten a quote.
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386 M. A. Petalas et al.
The interpretative facet of this research was inevitably influenced by the authors’
diverse and convergent characteristics. The research team consisted of two doctoral
students who have worked with children with ASD in a caring and educational capacity,
two researchers in the field of families with children with a developmental disability, and a
clinical psychologist working in services for people with autism. In this sense, the analysis
and discussion of the results represents an integration of care, research and clinical perspectives,
so the recognition of the authors’ interpretative roles led to concerted efforts to ensure
that interpretation was firmly grounded in the data.
Results
Five main themes emerged from the process described above. The first theme represents
siblings’ perceptions of the impact of their brother’s condition on their lives. The second
theme describes siblings’ perceptions of others’ attitudes and the influence that these attitudes
have on the siblings. The third theme illustrates the siblings’ tolerance towards their
brothers with ASD, while the fourth theme presents positive attitudes and experiences in
the participants’ lives with their brothers. The final theme refers to various sources of
support that the participants identified as helpful, or supports they would like to receive.
Theme 1. Living with a Brother with ASD: Siblings’ accounts of the impact on
themselves and their families
Growing up with a brother who has ASD is an experience unique to each sibling, ASD in
itself is a particularly complex disorder, given its multi-factorial nature, and it may differ
from one individual to the next. Accounts of the perceived impact of their brothers’ disability
varied greatly across the siblings, as did their responses to the challenges they faced. The
children spoke about the typically negative impact of having a brother with ASD on themselves,
their families, as well as on their brother with ASD. Children spoke about the disruption
in their daily lives caused by their brothers’ peculiar or aggressive behaviour, the
concessions they made, and the atypical roles some have had to assume. Lizzy reflected on
care-taking responsibilities for her brother with ASD despite being the younger sister: “I
never feel like the youngest, even when I was small … I suppose I learnt how to take care
of people just like if I had a younger brother”.
Elliott had resigned himself to interacting little with others and had forgone attention
from his parents and others because of what he perceived as his brother’s needs. Elliott
spent time in his room with his brother, reducing the contact he had with others:
Elliott: Well I keep on looking out for him, which I don’t really mind but he doesn’t
interact much so I’ve pretty much taken to staying in my room most of the
time. He wants a lot of attention. I just try and keep my distance from most
people.
Interviewer: How come?
Elliott: I don’t know, Oscar deserves most of the attention because he can’t understand
what it’s like to have no attention and I don’t mind staying in my room.
Maddie struggled with her brother’s idiosyncratic and eccentric habits that often meant
not being able to get to sleep until late. Maddie described how she had to deal with her
brother’s disruptive behaviour by taking a problem-focused approach:
He’s loud and very awkward, and when it’s night time and he’s got like a book, even when the
lights are out and he makes these funny little noises, so I can’t get to sleep until nine or ten. …
Jake’s loud and he won’t stop running into my bedroom when we’re talking; and then he just
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Siblings with a Brother with ASD 387
wants to play with us all the time. I get very irritated and I can’t get him out. That’s why I have
a lock on my bedroom door now.
Four siblings spoke about having to face physically and verbally aggressive behaviour
from their brother with ASD in the home. These behaviours were often reported as
unprovoked:
When like you play with something, Jack he comes along because he wants to put it in a little
order; and he absolutely takes it off you. And say you just walk off and just go and sit in the
sitting room and go and watch TV, he just comes in and starts chucking things at you … he
just chucks things at you, shouts at you, screams at you.
Kevin described how his brother’s tantrums and aggression had been difficult for him
in the past and continued to have a considerable negative impact on his life. Despite this,
Kevin made an effort to understand the reasons that might lie behind his brother’s challenging
behaviour:
Say if he is in a bad mood, and he takes it out on me, like he hits me, or throws something at
me, or calls me names, you know, it can affect me. When I was in primary, he did take it out
on me quite a lot and at school I felt, I wouldn’t be in a good mood because of what happened
that morning. It’s mainly in the mornings that he will start a tantrum, because he doesn’t like
how, he thinks we all rush to get to school, and he doesn’t like how we rush about, and he gets
frustrated about that.
Kevin went on to give an account of the disruption that his brother’s behaviour often
caused to family life by making references to his parents and the emotions he experienced
as a result:
I feel quite angry, because he has spoiled a day, which we were all enjoying to that point. I feel
quite sad because my Mum and Dad spend that money on us, and then he has to go and spoil
it by having a tantrum.
Having a family member with ASD also impacted on family recreational activities and
spending family time together was a luxury seldom enjoyed by many of the children. This
in turn resulted in perceived restricted opportunities for the siblings. Eddie spoke about the
disruption and constant pace that the family experienced during outings: “We can’t go to
many places, and when we go to town, we can’t stop and look at something, we always have
to go”.
Eddie also talked about how certain situations could prompt difficult behaviour from
his older brother with ASD:
Interviewer: … Would you have any advice to give any other younger brothers, like yourself,
who have an older brother like Isaac?
Eddie: Don’t wind him up, or he’ll hurt you, and don’t take him to a lot of shops …
Because when he sees something he wants, and he can’t have it, he won’t go
out of the shop.
Theme 2. Others’ Reactions: Implications for siblings
Having a sibling with ASD came with more than just the immediate demands of the condition.
Siblings often reported prejudice and misunderstanding in addition to having to
answer questions and combat the ignorance of others. As a result of a lack of understanding
and negative attitudes on the part of strangers and friends, they experienced a range of
emotions. The participants described feeling angry, embarrassed and anxious. This resulted
in providing explanations to others on the part of some, and silence and withdrawal from
others.
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388 M. A. Petalas et al.
Some siblings spoke about other children’s attitudes toward their brothers, and the
difficulties associated with reactions from peers:
It’s quite annoying because they don’t see Jack for who he really is; they just see a big person
that’s got Asperger’s and [who] is really annoying. (Leah)
Most of my friends are fine but it’s quite hard when people act different around him because
he’s autistic. I like when people just see him as a person. (Lizzy)
To some, social awkwardness and embarrassment were regular occurrences:
It can be quite embarrassing because they just want to go to my room and lock themselves in,
because none of my other friends have got autistic brothers and sisters, so they just get freaked
out by Jake sometimes. (Maddie)
Others, like Leah, reported feeling rejected as a result of negative peer reactions to their
brother with ASD:
Interviewer: What’s it like for you, Leah, when your friends meet Jack?
Leah: It’s like they don’t really like me any more, because they see Jack as someone
they don’t really want to know.
For one participant, Kevin, feelings of embarrassment often turned to frustration and
anger. This occurred in situations where Kevin believed stigmatising and discriminating
behaviour of an unsympathetic member of the public had been demonstrated. Kevin
perceived onlookers as lacking the necessary understanding and etiquette required when a
child with ASD acts in a way that is out-of-the-ordinary or when the child is out of
control.
… People look at us in funny ways, so if another family has a tantrum, but there’s nothing
wrong about them, nobody would look at them in a funny way, must be like sort of not
getting treated with respect as everybody else should, just because it’s a family with autism.
… So if he starts swearing or starts kicking, you know, it’s quite embarrassing because
people might think, oh, you know, their mother or father taught him to do that, so it’s quite
embarrassing to me to think that people sort of disrespecting my family and me and my
brother.
The children spoke about the curiosity that their brothers’ condition provoked in peers.
They also spoke about providing an explanation of the condition to others:
Just sometimes they sort of – well, when you make new friends they ask what’s wrong with
him and I have to explain it. And they get used to it when they get to know him. You tell them
more about it, and you tell them stories and stuff. (Lizzy)
In addition, the attitudes of others led some children to remain silent and guarded about
their siblings. In Elliott’s case this response followed a negative experience of teasing by
peers:
Interviewer: How come you’ve decided to not talk with other people about Oscar?
Elliott: Because I tried it once in primary and they started to make fun of my brother
so I didn’t want that to happen again.
Kevin expressed his unwillingness to talk about personal issues, and discussed his anxiety
about his friends who did not understand the reality of having a brother with ASD:
I don’t really speak about what has happened in the house with him. … I don’t know how my
friends would take it [talking about having a brother with ASD], you know, if they would
understand, or if they would think that, the house doesn’t really sound at all nice, sounds a bit
like a madhouse.
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Siblings with a Brother with ASD 389
Theme 3. Acceptance and Wanting Change
Particularly evident in this study were the siblings’ views that conveyed a sense of acceptance
toward their brothers with ASD. Many children acknowledged their siblings for
who they were, and perceived the disability as an inseparable part of them. They clearly
stated their positive acceptance of their brothers. Dylan’s views did not deviate from what
he perceived to be normal and his acceptance emerged in the form of normalising his
experience:
Jack’s just like an average person, that he’s just got this Asperger’s; but he’s just like a normal
kid. He’s just got Aspergers. … He’s just like my normal brother; I never even think about it.
I just recognise him as just another human.
Despite all of the children having in some way come to terms with their life circumstances
and the reality of their brother’s condition, tension between accepting their brother
while still wanting certain things to be different was apparent in some siblings’ remarks.
Elliott initially stated that he wouldn’t want to take away his brother’s ASD but then
expressed a desire to alleviate his brother’s ASD, which he viewed as responsible for the
lack of interaction between his brother and other family members:
Interviewer: OK, do you think that autism is something that you can get rid of?
Elliott: I think possibly, but I wouldn’t like to do it because I like Oscar how he is.
Interviewer: If you could wave a magic wand, is there anything that you would change
about Oscar?
Elliott: His autism so we could spend more time. Apart from that there isn’t much. …
Just so that he could talk and interact a bit more and spend more time with his
family.
Tension was also evident in Kevin’s account, where despite obvious dissatisfaction
with his brother’s behaviour, Kevin appeared forgiving of it, and justified it by acknowledging
that his brother is not fully in control of his actions:
I suppose, like on weekends, if he was less aggressive towards the family and friends. I don’t
like hitters or biters. I don’t think he’s really thinking about what he’s doing at the time, but I
suppose that could make him more aggressive and violent.
As the interview with Kevin progressed, he indicated his regret over the limited time he
spent interacting with his brother, and feelings of appreciation toward his brother gradually
surfaced. Kevin wistfully described how he would like to be able to communicate his appreciation
to his brother:
I’d like to take him to the little park, with my friends, and he’d make new friends by doing that.
I’d like to tell him how much I appreciate him, because I don’t really do that enough. He’s
often said to me, you’re the worst brother in the world, you know, I don’t like you, and I could
show my appreciation more towards him than I do now. Yes, I could show my appreciation
more towards him.
The tension that was evident in the siblings’ accounts offered a sense of the dynamic
nature of the children’s attitudes. It is not clear whether the children actively held these
tensions between acceptance and change, or whether these often contradictory views were
evidence of ongoing cognitive processing and appraisal, perhaps elicited by the interactions
in the interviews.
In contrast to these, five siblings clearly expressed a yearning for a change in some of
the behaviour of the sibling with ASD:
Well, I would, I think I’d change that he would be more, say like I wanted to play on the
computer and Jack’s had his turn, I would like him to be like, if you can have your turn, then
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390 M. A. Petalas et al.
Dylan can have a turn then I’ll go back on, rather than just saying, five more minutes; and then
ten minutes later, no, five minutes more. (Leah)
Maddie demonstrated a clear desire for change in her brother. She expressed a wish for
her brother to be normal so that she could interact differently with him:
Maddie: I’d make him a normal person.
Interviewer: Can you tell me more about that? How would he be normal?
Maddie: He’d just be like me. It would be nice to have a nice, normal brother because
I could do more with him, so that would be better.
Unlike all the other participants, the change that Lizzy longed for came in the form of
wanting to know more about her brother’s disability:
Lizzy: I’d just like to, to know how, to know more about Tyler, and the area around
Tyler, and that sort of thing really.
Interviewer: Do you mean autism?
Lizzy: Yes. Autism, and handicapped people, I’d like to learn more about that.
Throughout the interviews it was apparent that the experience of living and growing up
with a sibling with ASD had a profound influence on the children’s views and perspectives.
Lizzy welcomed having a brother with ASD and acknowledged the value and uniqueness
of him as an individual through an unconditional acceptance:
… I like him the way he is. He’s my brother. I’d never make him normal because I knew him
like this. And I can’t imagine a brother any other way. Well, not like Tyler any other way. I
can’t imagine him any other way, I wouldn’t change anything.
Theme 4. Positive Views and Experiences
Although the siblings acknowledged the challenges associated with having a brother with
ASD, most spoke of a number of positive aspects of the experience. The siblings reported
having fun with, feeling proud of and even marvelling at the achievements of their brother
with ASD. All of the siblings recognised positive qualities and traits in their brothers. They
recounted moments when other children enjoyed interacting and engaging in recreational
activities with their brothers. They described how they happily engaged in imaginative play
and shared humour, intimacy and a special bond with their brothers:
Oh, like last night when Jack and Dylan, they were doing a little show where Dylan was saying
that in school they were saying that girls were saying how boys walked, and boys were saying
how girls walked; and Jack kept on doing this little walk, and then we really laughed at the way
he looked. (Leah)
He’s really nice sometimes; he’s really fun. … At nights, we’d always go into one of our rooms
and play like paper games and stuff. Yes. Noughts and Crosses, and Hangman and things like
that which really is fun … and watch TV in his room, watching South Park because I wasn’t
allowed to, so he always used to let me because it was after my bedtime. (Kelsey)
Some siblings spoke with pride about the distinctive and idiosyncratic skills that set
their brothers apart from others, including their exceptional memories. Achievements,
however big or small, were regarded highly. The participants acknowledged the importance
of these attainments in the context of having ASD:
Well, what I like about Jack, he like knows absolutely loads more than me, and he’s got this
Asperger’s thing; I reckon some of that Asperger’s is to do with Jack’s learning, stuff like that.
… Well, really, it’s like if you have learning difficulties, it’s a lot harder to learn but I reckon
Asperger’s is like an extra brain that you have. (Dylan)
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Siblings with a Brother with ASD 391
He’s good at remembering things, like if he puts something up on his textbook, he’ll remember
it there, he’ll remember it easier than anyone else. (Eddie)
Last year, I’m not quite sure, he won a computer by doing horse riding. He didn’t win, but he
got it for doing so well, which I was really pleased by him for doing that. Not just for winning
the computer, but because he’d done so well. And, how he speaks to people, how he has a
social life here in school, how he’s pretty popular in school, you know, cause when it comes
to Christmas cards … he ends with 75 cards, you know, and all the teachers have said about
how well behaved he is. … I do enjoy how he talks to strangers and how he copes with dayto-
day life. (Kevin)
Lizzy appreciated her brother’s sincere and genuine nature:
I like that he always shows who he is. He always shows that he does have a personality and he
is someone. And also just so he can’t talk doesn’t mean he doesn’t have anything to say. He
can sort of speak to you in a way.
For some siblings, the experience of growing up with a brother with ASD was highly
valued. These children expressed a sense of gratitude and felt they had gained positively
and learnt from their siblings:
Interviewer: So can you tell me how you think it’s affected you?
Lizzy: I think it’s actually in a good way. I’ve learnt about caring well for people. …
We get to understand more about other people. Because if I didn’t have Tyler
then I wouldn’t know what autism means or understand all of that. But I have
more knowledge in that area, and about autism.
Theme 5. Support
Most of the siblings discussed different facilitators and sources of support they had had, or
indeed the lack of support. Siblings commented on both formal and informal support
networks. Sometimes the support was tangible such as a respite service or a support group.
At other times, the siblings spoke of the importance of being able to reach out to family and
friends. The siblings reported utilising different sources of support. They reported that
drawing on the help of peers, parents, or professionals allowed them to meet some of the
demands of growing up with a brother with ASD.
For some participants, the presence of another typically developing sibling in the family
acted as a source of support:
We just talk, it’s called our huddle. I talk to Dylan and Dylan talks to me about how things are,
and how we can get really frustrated with Jack. … We talk about how we can get so annoyed
when Jack gets mad, and how frustrated me and Dylan can be when we talk about things about
Jack, and how we’d like things to be different. (Leah)
Effective communication between parents and siblings appeared to facilitate the adjustment
process. Participants spoke about turning to a parent for help to acquire a greater
understanding of their brother’s disorder, as well as to seek their support when they felt
upset. An open channel of communication was important in facilitating their understanding
of emotionally sensitive topics:
Interviewer: What about with Carol, your mum? Do you talk with mum about Tyler?
Lizzy: I speak to her more about how things were about when he was born, how he
became and how they found out. And what it is.
Interviewer: And what about at home with mum and dad, do you ever talk about Max?
Kevin: … I speak to her, ‘bout, now and then when it’s actually affecting me, about
what happens in the house, like if I’ve got upset, and you can speak to them
about why I’ve got upset, you know, and about what happened in the house
that day.
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392 M. A. Petalas et al.
Lizzy spoke about the helpfulness of a respite service, which allowed the family to
spend time together enjoying a day out, while at the same time providing her brother with
the opportunity to enjoy leisure time himself:
… He had someone called Lana who took him out on days out which was fun for him, and gave
us as a family some time to go to places that maybe he wouldn’t like to go. Like just as a family,
without him, so that he would go where he liked to go, and us where we liked to go. Like just
daytrips.
However, some of the siblings also felt alone and lacking in support at times.
I feel quite annoyed, because there’s no one really to talk to about when I feel angry with Jack,
and when he always gets his own way, and stuff about that. (Leah)
Participants spoke about the valuable experience of attending support groups and being
able to share their experiences:
Interviewer: Kelsey, I’m wondering if there are any other questions that you think I should
ask other sisters who have a brother like Ryan.
Kelsey: Would you like to meet more people in the same situation as you?
Interviewer: OK. Why do you think that’s a good question?
Kelsey: Because once mum went to a meeting for people who had children like Ryan
and once she had to take me, and I met two other girls there, who had brothers
who were autistic which is cool because you can still have a laugh with them
and that, but they understand it better.
One valuable source of support for Kevin was the realisation of the extent to which
others shared his experiences and the knowledge that he could confide in people and that
they understood how he felt:
I go out with a staff member called Gemma who once a month takes me out to places of my
choice. If there’s anything that I want to say that I’m not too confident to do, you know I tell
her, and I can speak to her about it. I can speak to her about what’s happened at home, and also,
once a fortnight there’s a group in [location name] that I go to which go swimming or wall
climbing or different activities, where we just, it’s a youth club, but for children with similar
problems in the home. Yes, I quite, like felt that, I don’t feel alone, like there’s nobody else
like me, that’s got a sibling that’s disabled. I mean, before I went, about three or four years ago,
and before I went there I didn’t know anyone that’s got brothers or sisters that are disabled, but
when I went there, I found out there’s a whole range of children with problems worse, or not
as bad as me. I felt more reassured on how you know, I’m not alone, there is people to speak
to you know and there is other children with the same issues in the family as me.
Discussion
The siblings’ accounts highlighted a number of salient dimensions of experience with
regard to having a brother with ASD. Siblings differed in their attitudes and interpretations
of their experiences and all siblings identified positive aspects of having a brother with
ASD, albeit to varying extents. Siblings in the present study described the different ways
they were affected by having a brother with ASD, including becoming socially isolated,
changing their behaviour to deal with their brother’s strange habits and aggressive behaviour,
and having reduced family leisure and recreational time. These results are in line with
findings from previous research with siblings of children with ASD. For example other
studies have found that siblings faced problems with their brother’s or sister’s aggressive
behaviour and tantrums (Benderix & Sivberg, 2007 ; Mascha & Boucher, 2006 ; Ross &
Cuskelly, 2006), and with their strange and upset behaviour (Benderix & Sivberg 2007;
Royers & Mycke, 1995). Other studies also have indicated that siblings expressed feelings
of loneliness and reported impoverished social interactions (Bägenholm & Gillberg, 1991).
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Siblings with a Brother with ASD 393
In addition to the direct demands placed on them by their brothers with ASD, the
siblings described having to cope with the attitudes and, often unhelpful, reactions of
others. Peers’ and others’ reactions, and the need to explain their brother’s condition to
peers often led to feelings of embarrassment, frustration and anger. In previous research
Royers and Mycke (1995) also found siblings of children with autism were more
embarrassed in the presence of other children and peers compared to other groups of
siblings. In a qualitative investigation, Opperman and Alant (2003) reported that the
majority of their adolescent participants felt that others did not accept without prejudice
their sibling with a disability and often did not know how to act in the presence of a
person with a disability.
The current research highlighted siblings’ divergent attitudes toward their brothers with
ASD. Some expressed a positive acceptance of their circumstances, while others clearly
wanted change. Siblings experiences and perceptions did not appear to differ as a function
of their gender, however, Leah and Dylan, who were biological siblings, and grew up in the
same household as their brother Jack, who had Asperger’s syndrome, differed greatly in
their accounts. Leah recounted negative experiences and was less accepting of her older
brother’s condition. Dylan described positive experiences and acceptance toward his twin
brother. Siblings’ experiences and views may differ as a function of their relative age.
Earlier studies found a relationship between being younger than the child with autism and
increased emotional difficulties in the typically developing siblings (Gold, 1993; Hastings,
2003a). More research is needed to corroborate these findings and explore the potential
relationships between typically developing siblings’ relative age, their experiences and the
impact these might have on their adjustment.
A sense of ambivalence and tension was also evident in some of the siblings’ accounts.
Opperman and Alant (2003) noted high rates of ambivalent feelings in the adolescent
siblings of children with a severe disability. They postulated this reaction was an attempt
to regulate the stressful event and the negative emotions associated with having a sibling
with a disability; a mode of coping that adolescents use to work through their emotions
surrounding their sibling with a disability.
Alongside the siblings’ attitudes and accounts of their experiences, positive perceptions
of their brothers were present in each interview. These included perceptions of positive
interactions between siblings, feelings of pride and profound appreciation toward their
brother with ASD, and a sense of having gained from their sibling relationships. Similarly,
Mascha and Boucher (2006) found that when participants were asked what was the best part
of having a sibling with ASD, they referred to playing and having fun with their brother or
sister. Parents of children with disabilities have also recognised the positive impact on
siblings including learning about diversity (Taunt & Hastings, 2002).
The siblings also drew support from various resources including other typically developing
siblings in multi-child families, their parents, professional services such as respite
and sibling support groups. Siblings indicated that helpful practices included openly
communicating their thoughts and feelings and sharing their experiences with others in
similar circumstances. Some siblings however, like Leah, commented that support was not
always readily available. Bägenholm and Gillberg (1991) found that some siblings could
only talk with someone outside the home about their brother or sister with a disability.
Research with siblings of children with ASD has yet to fully recognise the importance
of their personal accounts and subjective meanings. These accounts might reflect important
aspects of the siblings’ appraisal processes that shape their responses to living with a
brother with ASD. Lazarus and Folkman (1984) have suggested that individuals’ emotional
responses are influenced by the appraised meanings they assign to given situations and that
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394 M. A. Petalas et al.
one’s coping response is also cognitively mediated through one’s appraisal, a process
which is dynamic in nature. However, it is not clear from this study whether the tension
observed in some of the siblings’ accounts reflects the ongoing dynamic appraisal process
that may enable some children to reframe events and experiences in adaptive ways or
whether these children indeed hold multiple, and at times conflicting, views of their circumstances.
Given the small size of the sample, which is typical of phenomenological investigations,
and the relatively young ages of the participants, who were the only source of
information, these findings need to be interpreted with caution. Future research of this type
can be augmented by data from participant-observations, which may enable researchers to
independently seek further information to corroborate or augment reports from participants.
Notwithstanding the aforementioned considerations on the generality and objectivity of the
findings, the results nevertheless reflect the subjective views and perceptions of the siblings
that participated in the study.
There has been little research systematically exploring childrens’ coping strategies in
the context of having a sibling with ASD. Ross and Cuskelly (2006) identified emotional
regulation and wishful thinking as the most common coping strategies employed by
siblings of children with ASD. Royers and Mycke (1995) found that siblings of children
with ASD used other-directed cognitions (e.g., blaming others) as coping strategies more
often than other sibling groups. Siblings’ perceptions may be informative in examining
coping responses and adjustment outcomes. Elliott’s perceptions of the impact of ASD on
his brother may have mediated his response of adopting a passive-withdrawal coping strategy.
Future research needs to consider the factors that mediate the adjustment and coping
of siblings of children with ASD. The chronic nature of ASD mean that some siblings will
have long-term and changing needs.
Siblings’ positive perceptions may serve a functional role in siblings’ adaptation to
growing up with a brother or sister with ASD (Taunt & Hastings, 2002). There is evidence
from previous studies that perceptions of siblings with ASD are associated with sibling
adjustment and relationship outcomes. Gold (1993) reported that for male siblings of boys
with autism the response that “there is nothing good about having a brother with autism”
was associated with higher scores on the Child Depression Inventory (CDI; Kovacs &
Beck, 1977). McHale, Sloan, and Simeonson (1986) found that worries about the future of
the child with a disability, perceptions of parental favouritism toward the child with a
disability, and feelings of rejection toward the child with a disability were associated with
more negative sibling relationships. Conversely, when siblings perceived their parents and
peers as reacting positively to the child with a disability, they reported more positive relationships
with their brother or sister with disability. Future research should explore the
potential function of positive perceptions as a process variable affecting the adjustment and
relationships between individuals and their siblings with ASD. In particular, one important
question to address is whether positive perceptions directly mediate the relationship
between having a brother or sister with ASD and sibling adjustment, or whether they
indirectly affect sibling perceptions via the sibling relationship. Recent findings from a
longitudinal study investigating the effects of positive sibling relationships on child adjustment
suggest that affectionate relationships between siblings moderate the relationship
between stressful life events and subsequent child adjustment (Gas, Jenkins, & Dunn,
2007).
Acceptance of the child with ASD was a prevalent theme in our study and one that has
not featured to date in any of the literature investigating the adjustment of siblings of children
with ASD. Positive acceptance in particular might be a plausible mechanism by which
siblings may come to accept and tolerate difficult experiences.
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Siblings with a Brother with ASD 395
The results from this study indicate the importance of support from different sources.
A lack of support may have a more adverse affect on some siblings than others. Gold (1993)
noted that siblings with a brother with ASD who had no one to talk to about having an autistic
brother scored significantly higher on the CDI, a measure of childhood depression, than
those who did. Sibling support groups may validate and normalize siblings’ experiences.
Support groups might additionally be helpful in that they may offer siblings a type of
respite. Wolf et al. (1998) suggested that securing a supportive relationship for the typically
developing sibling outside of a stressful family system may be an important component of
intervention that would benefit siblings of children with pervasive developmental disorder.
A similar suggestion might operate for siblings of those with ASD.
Implications
The findings from the present study point to a number of practical implications in areas that
might be targeted through intervention, pedagogical support and training and information
for parents, siblings and professionals who come into contact with families where there is
a typically developing child and a child with ASD. Raising awareness in families and
professionals of the potential issues faced by siblings of children with ASD may facilitate
increased dialogue in families, and also between families and professionals to improve the
lives of siblings.
Interaction training for siblings of children with ASD may prove valuable in enhancing
the social behaviour and communication between siblings and reducing conflict. In
addition, continuity of training will ensure that the support siblings receive matches the
demands that siblings face at different time-points. For a number of siblings in this study
parent–child communication played an important role in their understanding of their
brother’s condition and coping with problematic situations. Parents may act as both
trainers and agents for the effective support of siblings. In addition to an educating role,
parent training may help parents learn how to appropriately reinforce and maintain
siblings’ efforts to positively interact with their brother or sister with ASD. Lobato and
Kao (2002), reported on an integrated sibling–parent group intervention for 54 typically
developing siblings with a brother or sister with a chronic illness or developmental
disability, and their parents. Results showed improvements in sibling connectedness and
knowledge of the child’s disorder and behaviour problems, which were maintained at a
three-month follow-up.
If sibling support groups are developed there is a need to tailor their product, taking
into consideration the developmental level of the children they are targeting for support
or intervention. Evans, Jones, and Mansell (2001), for example, noted that discussion
groups were not received as well as activity groups, in a small (N = 10) sibling-group of
children in middle childhood (aged eight to 12-years) who had a sibling with intellectual
disabilities and challenging behavior. More importantly, increasing siblings’ access to
support, which offers developmentally appropriate information and promotes positive
perceptions and experiences, early in their development may have lasting effects on their
adjustment and relationships. Middle childhood is an ideal period in which to focus
supports for a number of reasons. Specifically, siblings have a more mature understanding
of illness (Glasberg, 2000) and have high access to each other during those years
(Knott et al., 1995).
In accord with previous research on resilience in families with a child with autism, the
accounts from the siblings in this study showed evidence of resilience-related processes,
such as: positive meaning-making of disability and greater appreciation and acceptance of
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396 M. A. Petalas et al.
other people who are different (Bayat, 2007). Garmezy (1985) outlined a triad of protective
factors thought to promote resilience in childhood, namely: (1) constitutional child variables
such as positive temperament, positive self-esteem, ability and prosocial behaviour;
(2) a supportive family environment, including a secure attachment to at least one parent;
and (3) broader social support from the extra-familial environment (e.g., community,
school, neighbourhood). Subsequent research has confirmed the importance of these and
highlighted the protective role of positive temperament (child perceived as easy-going and
likable to peers and teachers), and interfamilial relations (warm mother–child relationship)
(Smith & Prior, 1995). Practitioners may want to acknowledge and build on the positive
views held by siblings, help them recognise their personal strengths and abilities, promote
positive familial relationships characterised by open channels of communication and
provide resources to allow families to engage in bonding activities. In this study, others’
reactions appeared to impact siblings in a negative way. Promoting knowledge and education
about ASD in schools and communities should always be a part of family-support
service provision.
Conclusion
Allowing siblings to describe their experiences and express their thoughts about life with
their brother with ASD has been an important aspect of this study. The sibling viewpoint is
conspicuously absent in the literature and the siblings themselves are seldom given the
opportunity to provide first-hand information. The phenomenological perspective
employed in the present study allowed the researchers to focus on the way siblings, in the
middle and secondary years, made sense of growing up with a brother with ASD, and
offered siblings a voice. The results hold implications for parents, siblings, clinicians,
researchers and policy-makers, by contributing to a deeper understanding of the lived experience
of siblings with a brother with ASD, and exposing taken-for-granted assumptions.
Acknowledgements
This research was supported in part by funding from the National Autistic Society Cymru
and from the European Social Fund, Object 1 area funding.
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