Corboy_ASDsiblings2016

“Growing up was incredibly hard”
Exploring the Experiences and
Concerns of Young Adults who have
a Sibling with ASD
12457812
Thesis presented as part of the requirements for the
BA (International) in Psychology, University College Dublin
Supervised by Dr. Tina Hickey
April 2016

ii
Table of Contents
List of Tables iii
List of Figures iv
Abstract v
Acknowledgements vi
Chapter 1: Introduction 1
Chapter 2: Method 7
Chapter 3: Results 11
Chapter 4: Discussion 29
References 36
Appendices 41

iii
List of Tables
Table 1: Time length for each measure. 9
Table 2: Participant and sibling-related information. 11
Table 3: Frequency of themes related to ‘Growing Up’. 14
Table 4: Frequency of themes related to ‘Impact on Family’. 17
Table 5: Frequency of themes related to ‘Current Relationship’. 19
Table 6: Traits associated with autism related experiences. 21
Table 7: Frequency of themes relating to ‘Future Concerns’. 23

iv
List of Figures
Figure 3.1: Conceptual model: Main themes and related sub-themes. 13
Figure 3.2: Overview of factors related ‘Impact on Self: Growing Up’. 16
Figure 3.3: Overview of factors related to ‘Impact on Family’ 18
Figure 3.4: Overview of factors related to ‘Current Relationship’ 21
Figure 3.5: Overarching theme of ‘Personal Development: Benefits vs
Costs’.
23
Figure 3.6: Overview of factors related to ‘Future concerns’. 25
Figure 3.7: Correlation graph of LSRS and ATEC Total Scores. 26
Figure 3.8: Bar chart representing the brief COPE means. 27
Figure 4.1: Conceptual model: Overarching themes, impact over time. 29
Figure 4.2: Factors related to the overarching theme of ‘Vulnerability’. 31

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Abstract
The aim of the present study was to explore the experiences of young adults who have
a sibling diagnosed with Autism Spectrum Disorder (ASD). A qualitative research
design was utilised, supplemented by the use of three standardised measures: the
Autism Treatment Evaluation Checklist (ATEC), Lifespan Sibling Relationship Scale
(LSRS) and brief COPE. A semi-structured interview schedule was developed based
on previous research in this area. This was administered to 14 participants (9 female;
5 male) aged between 18-27 years, with siblings whose ASD symptoms ranged from
mild to moderate on the ATEC scale. Thematic analysis was used, and the analysis
indicated the salience of themes relating to the impact of ASD on participants while
growing up in terms of personal development and impact on the family in general, as
well as aspects of the current relationship with the sibling, and concerns regarding
their future care needs. Findings suggest that ASD imposes challenges for siblings,
particularly during their childhood, but that there is also evidence of positive aspects
of the sibling relationship. One of the strengths of this study was the use of
standardised measures for triangulation, although this corresponded with a
methodological weakness of these measures, in that they were not specifically
designed for this particular population. The implications of the findings for educators
and mental health professionals were discussed, such as the need for more services for
adults who have a brother or sister with ASD. Further research is also needed to
explore to nature and role of communication patterns within families affected by ASD,
regarding the future roles and responsibilities of these young adults.

vi
Acknowledgments
First and foremost I would like to thank my supervisor, Dr. Tina Hickey, for her
invaluable assistance, guidance and support throughout the entire project. Working
together has been one of the most rewarding experiences that I’ve had during my time
in UCD.
I would also like to give sincere thanks to all the participants who gave so freely of
their time to take part in this study and so willingly shared their thoughts, experiences
and views on their own personal journeys of growing up with a sibling with ASD. I
am very grateful to have had the opportunity to hear your narratives and it has been a
great privilege to speak with you all. I would also like to thank the local school for
children with autism for giving me assistance in recruiting these participants.
Finally I would like to thank my family for their support throughout all stages of the
project, particularly my sister for her role as the pilot participant of the study.

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Chapter 1
Introduction
Overview
There is a body of research on ASD, its symptoms and interventions, but relatively
less is known about the experience of families, and particularly the experience of
typically developing (TD) children growing up with a sibling with ASD. This study
seeks to investigate the experiences of TD siblings who have grown up with an
individual with ASD by exploring information from the siblings themselves about
their own childhood experiences and investigating potential long term outcomes
related to these experiences. The focus on young adults specifically is intended to
broaden the knowledge base regarding how such experiences affect their sibling-
relationship as children and currently as adults.
Sibling Relationships
The sibling relationship is one of the most enduring and unique relationships in one’s
lifetime; contributing to the development of emotional understanding, self-regulation
and sense of belonging and comfort (Brody, 2004). During adolescence and young
adulthood, research has shown that siblings experience decreased contact and
intimacy with each other as they attempt to establish their own independent lives
(Cicrelli, 1995).
Siblings of individuals with intellectual disability
For TD siblings of individuals with intellectual disabilities (ID), the sibling bond is
likely to be affected in several distinct ways. Research indicates that having a brother
or sister with intellectual disability significantly impacts the life course of the sibling
in areas such as personality, relationships, career choice and family formation
(Seltzer, Greenberg, Orsmond and Lounds, 2005; Taylor, Greenberg, Seltzer and
Floyd, 2008). This line of research has also shown that adult siblings of individuals

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with ID may also be forced to play conflicting dichotomous roles with their
brother/sister; as both sibling and present and future caregiver (Rawson, 2009).
Autism Spectrum Disorder
The Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM- 5)
defines the essential features of Autism Spectrum Disorder (ASD) as those that
include “persistent impairment in reciprocal social communication and social
interaction, and restricted, repetitive patterns of behaviour, interests, or activities.
These symptoms are present from early childhood and limit or impair everyday
functioning” (American Psychiatric Association [APA], 2013). Although there are
relatively little epidemiological data available in Ireland, recent estimates of the ASD
prevalence in Ireland are said to occur at about 1% (Staines, Sweeney, Boilson and
Ramirez, 2013), which marks a similar prevalence rate to that of the United States
(APA, 2013) .
There are cognitive, social and behavioural limitations associated with ASD,
which include deficits in understanding the perspectives and emotions of others; a
lack of reciprocity in conversations and troubling behaviours such as aggression
(Rutter and Schopler, 1987; Donenberg and Baker, 1993). Such limitations have
been shown to present challenges to sibling relationships, and studies have indicated
that the severity of these autistic symptoms can have a negative effect on the sibling
relationship for TD siblings (Orsmond and Seltzer, 2007; Aksoy and Bercin
Yildirim, 2008).
Research on adjustment of TD siblings of persons with ASD
The majority of research on TD siblings of persons with ASD has been focused on
their psychological adjustment and has generally presented mixed results regarding
the detrimental versus beneﬁcial effects of having a brother or sister with autism.
Some researchers have found that such siblings experience more negative outcomes,
such as impaired social interactions, emotional difficulties and poorer academic
performance (Bagenholm and Gillberg, 1991; Gold, 1993; Barak-Levy, Goldstein
and Weinstock, 2010). Other studies have found no evidence of dysfunction
(Orsmond and Seltzer, 2007a; Tomeny, Barry and Badder, 2012), with some
indicating the positive psychosocial functioning of siblings of persons with ASD,

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including the development of a positive self-concept, higher levels of maturity and
increased empathy (Vertre, Roeyers and Buysse, 2003; Mack and Reeves, 2007;
Benderix and Sivberg, 2007). Yet the predominant trend of sibling oriented research
has focused on finding evidence of negative dysfunction for TD siblings of persons
with ASD, rather than evidence to suggest strengths and positive traits. Thus, the
current research base may overestimate disturbance in the sibling relationship and
subsequently underestimate strengths and resilience among the TD siblings of
persons with ASD.
Sibling relationships during childhood
The research on children with a brother or sister on the ASD spectrum has yielded
mixed results regarding their relationships during childhood. Studies comparing the
relationship quality of siblings of children with ASD, Down syndrome and typically
developing children have found that all three groups reported similar levels of
relationship satisfaction despite their contrasting experiences (Bagenholm and
Gillberg, 1991; Roeyers and Mycke, 1995). Other comparative studies have revealed
that TD siblings exhibited a close relationship with their autistic brother/sister, which
included positive aspects such as a greater sense of admiration for their brother or
sister, pride in their sibling’s achievements against adversity, and less quarrelling
compared to Down syndrome and typically developing sibling dyads (Mates, 1990;
Knott, Lewis, and Williams, 1995; Kaminsky and Dewey, 2001).
Contradicting the above findings are the many studies showing negative
outcomes for the sibling relationship in families where a member has a diagnosis of
ASD. These negative outcomes included worries regarding the future of their
brother/sister, and feelings of embarrassment and dissatisfaction with the atypical
nature of the sibling relationship (McHale, Sloan and Simeonsson, 1986; Roeyers
and Mycke, 1995; Rivers and Stoneman, 2003). The quality of sibling relationships
has also been found to be negatively impacted by fear of aggression from the sibling
with ASD (Bagenholm and Gillberg, 1991; Ross and Cuskelly, 2006). Generally,
this research suggests that young TD siblings experience a negative relationship with
their ASD sibling. It is important to note, however, that most research on young TD
siblings of children with ASD relies on parent report, which may be negatively
biased and overestimate outcomes for this population.

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Qualitative research findings on siblings of persons with ASD
Findings on ASD sibling relationship during childhood
Recent qualitative investigations have allowed exploration of these findings in
greater depth. Petalas, Hastings, Nash, Reilly and Dowey (2009) showed that autism
can have a major effect on family structures and interactions, as persons with ASD
often monopolise parental attention; impose daily disruptions and reduce family
recreational time. Similar experiences were reported from TD adolescents, although
it was evident that these siblings were, by that age, more accepting of their
brother’s/sister’s autism, showing the impact of age and maturity in learning to cope
with the challenges of a sibling with autism (Petalas et al., 2012). This trend was
further supported by Benderix and Sivberg (2007), who also found that both younger
and older TD siblings expressed feelings of responsibility and protection toward
their sibling with autism; a responsibility that was found to grow as they progressed
into their adult years.
Findings on adult ASD sibling relationships
In comparison with childhood research, there are relatively few qualitative studies
that focus on adult siblings of individuals with autism. Two investigations carried by
Tozer and Atkin (2013; 2015) have focused on the sibling relationship in the context
of their adult lives. These studies revealed that most TD siblings were currently
highly involved in their brother/sister’s lives, providing advocacy, while the majority
also expected to assume future caregiving responsibilities. Notably, the adult TD
siblings expressed dissatisfaction with the lack of formal supports available to them
while growing up with a sibling diagnosed with ASD, as well as with both their
current and future caregiving responsibilities. This highlights the unique roles and
challenges that siblings with an autistic brother/sister experience not only in
childhood, but in many cases also throughout their lives.

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Issues regarding the future
A strong finding from the research literature on adult TD siblings of persons with
ASD highlights the burden of additional family responsibilities compared to their
peers (Wilson, 1992; Seltzer et al. 2005; Hodapp and Urbano 2007; Orsmond and
Seltzer 2007a, b). Although many siblings have expressed apprehension regarding
their caregiving expectations, Greenberg, Seltzer, Orsmond, and Krauss (1999) have
found that closeness in the sibling relationship early in life increases the likelihood
of future care and support for their autistic siblings, which highlights the importance
of fostering a positive sibling relationship from a young age. Furthermore, Griffiths
and Unger (1994) report that greater communication in families regarding future
planning was positively associated with sibling satisfaction with their future
responsibility. However research has shown that Irish siblings and families are
relatively poor at planning for their disabled brother or sister’s future needs (Seltzer,
Krauss, Gordon and Judge, 1997; Egan and Walsh, 2001).
Internationally, sibling-oriented research has encouraged revisions of
government legislation in the UK and has prompted an advance in wider family
involvement and sibling support networks (Meyer, 1993). Whilst these services have
been widely beneﬁcial to young siblings, groups such as Sibshops both in the UK
and Ireland (Conway and Meyer, 2008) are typically aimed at children, leaving
teenage and adult siblings with little support. If TD siblings are to provide advocacy
or care for their autistic brother or sister, support and advice is necessary at whatever
age (Conway and O’Neill 2004; Li and Ping 2006).
The Irish Context
Although there is relatively little sibling-oriented Irish literature available with
respect to ASD, there are several studies which focus on intellectual disability (ID).
Existing Irish literature suggests that families of people with ID experience many
disappointments and struggles with services offered by the Health Service Executive
(HSE) (McConkey, 2005; Kenny and McGilloway 2007; Power, 2008; McConkey,
Kelly, Mannan and Craig, 2010; Chadwick, Mannan, Garcia Iriarte, McConkey et
al., 2013). Despite the fact that two thirds of people with ID who avail these services
are supported at home by their families, there is a poor understanding of the nature of
family support structures and the circumstances in which care is provided (Carr,

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Linehan, O'Reilly, Walsh and McEvoy, 2014). Few Irish studies have specifically
focused on the TD sibling’s perspective on such issues, particularly with regard to
ASD.
The Current Study
Most research on TD siblings has focused on their psychological adjustment as a
consequence of living with someone with ASD. Very few studies, particularly in
Ireland, have attempted to explore the perspectives of adult siblings on their
experiences of growing up with a brother or sister on the ASD spectrum. The aim of
the present study is to further the approach of Petalas and colleagues (2009, 2012),
who explored the experiences of children and adolescent siblings retrospectively by
investigating the perspective and experiences of young adults who have a sibling
with ASD. The present study will be guided by the following research questions:
Research questions
(1) How do these participants present their childhood experience of growing up
with a brother or sister with ASD?
(2) What is the impact for these participants of having a family member with
ASD in terms of their current family interaction and relationships?
(3) Overall, how do the participants view the impact of how growing up with a
brother or sister on the ASD spectrum?
(4) What do the participants see as their concerns regarding the future, for both
themselves and their autistic sibling?

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Chapter 2
Methodology
Research Design
This study employed a primarily qualitative design, supplemented with standardised
quantitative measures. Qualitative data were collected in semi-structured interviews,
consisted of approximately 20 open-ended questions eliciting reflections on
participants’ experiences of growing up with their autistic sibling. The qualitative
data were transcribed verbatim. Analysis of the interviews adopted a thematic
analysis approach (Braun and Clarke, 2006). Due the exploratory nature of the
current study, this method was chosen on the grounds that it tends to be more
inductive than deductive, with themes emerging during the research (Guerin, 2013)
The quantitative aspect of the design collected data on standardised
questionnaires, which included the Autism Treatment Evaluation Checklist (ATEC);
Lifespan Sibling Relationship Questionnaire (LSRS) and the Brief COPE. The
computer program, SPSS version 20 was used to analyse the quantitative data.
Materials
Interviews
The semi-structured interview protocol is given in Appendix A. Development of the
interview protocol was informed by Petalas and colleagues (2009; 2012), where
following advice from the author (Petalas, personal communication), items
specifically aimed towards children were removed (see Appendix A for interview
protocol). Some quantitative measures were included in order to gather data on the
sibling with ASD quickly and in a quantifiable way, without having to spend time in
the interview extracting this information. A portable Dictaphone, Olympus WS-852
4GB, was used to record the interviews.
Autism Treatment Evaluation Checklist (ATEC)
The ATEC (Rimland and Edelson, 1999) was used in order to allow participants to
quantifiably present their brother/sister’s autism symptom severity. The ATEC is not

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copyrighted and is open access. It provides both an overall score of symptom
severity and subscale scores related to different areas of functioning, with higher
scores indicating more severe symptoms and can be quickly completed (Appendix
B).
Lifespan Sibling Relationship Questionnaire (LSRS)
The LSRS (Riggio, 2000) assesses participants’ level of satisfaction in the sibling
relationship across their lifespan. It consists of three subscales for childhood and
three subscales for adulthood. Permission to use this scale was granted by the author
(Appendix C). The total LSRS is reflective of the individual’s overall satisfaction
with the sibling relationship, where higher scores are indicative of greater
satisfaction (Appendix D).
Brief Cope
The Brief COPE (Carver, 1997) uses a 4-point Likert scale to query participants on
how frequently they employ 28 different behaviours and cognitions when coping
with a specific stressful situation, which in the context of the current study relates to
the stresses of growing up with an autistic brother or sister (Appendix E).
Participants
Samples in qualitative research tend to be smaller, with 10-15 participants being a
normal range based on previous research (see, for example, Petalas et al., 2012;
Benderix and Sivberg, 2007). The participant recruitment process was facilitated by
a school for children with autism in Leinster. Once a few participants had taken part,
snowball sampling was utilised as participants referred the study onto others who
fitted the eligibility criteria. A total of 14 participants took part in the present study,
with an age range of 18-27 years (M=20.5 years). This sample of participants
consisted of 9 females (n=9) and 5 males (n=5), yielding a gender ratio of 1: 1.8
(male: female).
Pilot Study
One face-to-face pilot interview was carried out with a female participant. This
allowed testing of the interview protocol, ensuring clarity of questions, approximate

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length of response, and quality of recording using the Dictaphone. Following the
pilot, modifications were put in place to improve the interview process, mainly
through re-wording and re-ordering of the questions. Additionally, the pilot
participant was timed as she completed the three quantitative measures to ensure that
the test burden was not excessive.
Procedure
The data collection was carried out over the January period as most of the
participants were students and were therefore available to take part during the
Christmas holidays. Email invitations were distributed by the researcher and posted
on the Facebook page of a school in Leinster for children with autism. All the
interviews (14 face-to-face) took place at the homes of the participants and lasted 25-
40 minutes. At the beginning of each interview it was explained that the participant
did not have to discuss anything they did not want to; that the interview could be
stopped at any time and that all responses given were conﬁdential and anonymous.
Signed consent was obtained before the interview process (see Appendix F for
consent form). After the interview the interviewer pursued general conversation off
record to lighten any negative mood created from the interview questions. The
researcher then left the room and the participants were given time to complete the
three questionnaire forms.
Table 1. Time length for each measure
Measure Length of time
Interview Protocol 25-40 minutes
ATEC 10-15 minutes
LSRS 5-10 minutes
Brief Cope 1-5 minutes

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Ethics
Due to the sensitive nature of the present study, the study was submitted to a full
ethical review by the Undergraduate Research Ethics Committee for the School of
Psychology (UREC-sPSY) in University College Dublin. Ethical approval was
granted (Appendix G). Information on the aims of the research and potential topics
that will be discussed was provided via an information sheet (Appendix H), which
was sent to the participants via email a number of days prior to the interview.
The participants were initially identifiable from the voice recordings and
demographic questionnaires. However, self-generated codes were used to de-identify
the participants and thus ensure their anonymity. These codes were also assigned to
the participants’ corresponding questionnaire forms. Since the topic was of a
sensitive nature, participants were given the option to pause or withdraw from the
study at any time. After completing both the interview and the questionnaires, the
participants were re-shown the information sheet which contained counselling
contacts in case the participants was upset by the topics of discussion. All
participants reported positively on the interview experience, none requested that the
interview be terminated prematurely and all agreed to have their data archived.

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Chapter 3
Results
The study aimed to explore the experiences of typically developing young adults
who have a brother or sister diagnosed with autism spectrum disorder. The main part
of the study employed a qualitative design to investigate the impact of growing up
with an autistic sibling, but quantitative data were also collected from participants, in
the form of standardised measures of stress; autism symptom severity and
satisfaction with the sibling relationship.
Background Information
Data were gathered from 9 females and 6 males using semi-structured interviews.
Table 2 presents information on the demographics of the participants, their sibling
and the total scores of autism symptom severity and overall relationship satisfaction.
Table 2. Participant and sibling-related information
1. l indicates sibling with ASD has low Autism severity, m =Moderate autism severity
Sex Frequency Age Range Occupation Currently live at home?
Female 9 18-22
6 Students
3 Professionals
6 Yes
Males 5 18-27
4 Students
1 Professional
4 Yes
Sibling Information
P ID
gender
Sibling with
ASD
Sibling with
ASD
ATEC
Total Scores
(Range: 1-180)
LSRS
Total Scores
(Range:0-240)
F2l1 Male Older 9 157
F6l Male Younger 10 177
F1l Male Older 11 201
F8l Male Older 48 210
M2l Male Younger 52 153
M4l Male Older 52 159
M3m Male Older 59 127
M1m Male Younger 60 173
F9m Female Younger 67 158
M5m Male Younger 72 146
F7m Male Older 85 140

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It was noteworthy that 93% of the siblings with ASD were male. This is reflective of
the gender imbalance found in autism, with the ratio normally being 4:1 (male:
female) (APA, 2013). The majority of the participants sampled here were students
(71%), and currently live with their sibling (71%), while the remainder live away
from home.
Method of analysis
Thematic analysis was chosen due the exploratory nature of this research, as this
particular method tends to be more inductive than deductive (Guerin, 2013). Data
were searched for themes, then coded and grouped into a coding frame.
Inter-rater reliability
The first coding frame was developed by the researcher after interviewing and
transcribing all interviews. This coding frame was then applied by the researcher and
the Supervisor (with experience in qualitative research) to a sample of transcripts.
Following discussion, the coding frame was then amended to include other themes
which had previously been treated as sub-themes (e.g. impact on family), and other
sub-themes were combined or new ones added. Through this process, a
comprehensive coding frame with mutually exclusive themes emerged (see
Appendix I). Following this process of reflection and amendment, the revised coding
frame was applied by the Supervisor to 15% of the data and a parallel coding of the
same transcripts was carried out by the researcher to examine inter-rater reliability.
The agreement of 74% was very good, as Guerin and Hennessy (2002) recommend
an agreement of 70% between raters as the minimum requirement, and the inter-rater
reliability in the present study exceeds that level.
Identity codes for anonymity
Findings relating to the research questions are presented here. Codes were used to
ensure the participants’ anonymity. In order to protect confidentiality, the quotes are
presented in the context of adapted codes and the removal of any potentially
identifiable information. Codes indicate the gender of the participant and the severity
of the autism symptoms of their sibling.

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Reliability for quantitative measures
Cronbach’s alpha for this sample was calculated for each quantitative measure (see
Appendix J for test for reliabilities table). For the ATEC scale, a Cronbach’s alpha of
0.94 was observed, suggesting very good internal consistency and reliability. The
ATEC also had four subscales, all of which were also observed to be reliable.
Reliability analysis for the LSRS overall indicated a Cronbach’s alpha of 0.94 in the
sample, with all six subscales also revealing satisfactory reliabilities. Finally, the
brief COPE scale observed an overall Cronbach’s alpha of 0.95.
Addressing the Research Questions
Using thematic analysis, four main themes representing the key aspects related to
growing up with an autistic sibling were identified. These themes are also illustrated
by a series of tables which demonstrate the frequency of subthemes, with sample
quotes to provide representation of the data. These main themes and related
subthemes are depicted in a conceptual model illustrated in Figure 1.
Figure 3.1: Conceptual model: Main themes and related sub-themes
•Limited time together
•Close bond
•Acceptance
•Wishful thinking
•Family discussions
vs Neglect
•Future residence of
sibling
•Lack of services
•Tension/ Need to
appease
•Disrutive family
environment
•Reduced family
activities
•Encounters with
friends
•Positive memories
•Perceptions of others
•Aggression
•Responsibility
•Anxiety/ Distress
Impact on
Self:
Growing Up
Impact on
Family
Current
Relationship
Future
Concerns

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1. Impact on Self - Growing up
Table 3 summarises the subthemes relating to ‘Impact on Self: Growing Up’ and
presents illustrative quotes.
Table 3. Frequency of themes related to experiences of growing up
Theme Example %
Encounters
with friends
They would be kind of afraid to do anything for him because
of probably the lack of knowledge about what autism is. (M2l)
100
Positive
memories
I got him this ‘gun’ for Christmas and we were playing with
all day and it was so funny. It was just something nice. (F1l)
72
Perceptions of
others
I suppose when I was younger, I began to feel self-conscious
of it. (F9m)
36
Sense of
responsibility
From a young age I was minding him [Name], looking after
him and stuff when my mam and dad were busy (F8l)
36
Aggression
I remember he used to pull hair a lot and he used to throw
serious tantrums, maybe hitting and screaming. (F3l)
21
Encounters with friends
All participants alluded to encounters between their friends and their sibling in the
past. However, there was considerable variability amongst the participants in terms
of how they construed such encounters. Some of the participants stated that they felt
embarrassed by their sibling’s atypical behaviour in the past.
You wouldn’t ever bring friends back to the house and everything like that.
Like that’s probably a thing you’re initially embarrassed about and you
don’t want him to cause a scene or anything like that. (M4l)
Those who did bring friends home felt obliged to inform their friends of the nature
of their sibling’s autism in order to avoid awkward situations.
I think it’s an obligation to tell people before they go into that situation
because you shouldn’t just expect people to be comfortable with it just
because you spent your whole life with autism, doesn’t mean everyone
understands. (F6l)
Conversely, others mentioned positive encounters between their sibling and friends,
despite initial apprehensions:
They love him. I was really, really, really scared in the beginning if they
were gonna kind of think ‘oh he’s weird or like why isn’t he talking to us
properly’ but he gets on really well with them’ (F2l)

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Positive memories
It was noteworthy that a large majority (72%) of participants reflected fondly upon
their childhood experiences with their sibling, downplaying the significance of their
sibling’s autism or any impact it may have had on their relationship:
We were really good friends when we were little because we just didn’t
really know, because [Name] had always had autism but there wasn’t really
a difference or whatever. (F3l)
I got along with him from the start… we always kind of did stuff together.
(F8l)
Sense of Responsibility
About a third (36%) of the sample reported that they spent a lot of their time looking
out for their sibling; a responsibility which was at times burdensome for these
participants.
I couldn’t leave him (when the parents were out), so it affected my social
life. You kind of had to feel you were responsible. (M2l)
One participant described her ‘lost childhood’ as a result of this responsibility.
I kind of lost a bit of my childhood because I was kind of like a second
mother to him. Like whenever mam wasn’t there I’d be always looking out
for him and taking care of him. (F2l)
Perceptions of others
Five participants (36%) reported experiences from their childhood of difficulties in
public places with their siblings, with the term ‘tantrums’ commonly used:
I guess it can be difficult, like maybe when we were younger, they used to
like throw tantrums in public places. (F5l)
Aggression
Three participants (21%) described instances in which they were directly involved
with their sibling’s aggressive behaviours, experiences which they found
particularly challenging:
When I was around 5 and he was 7, he used to attack me a lot… sometimes
I’d have to be locked into my room at night because I could hear [Name]
trying to get in - it was hard. (F2l)

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Anxiety/ Distress
It was noteworthy that three (21%) of the interviewees mentioned that they were
often distressed by the autistic sibling’s behaviours. One participant described how
growing up with an autistic sibling had a negative psychological impact on her
development as she suffered from anxiety attacks.
I suffer from anxiety attacks now sometimes because of it…If I feel I don’t
have control over something I’d get really breathless and I’d get really
panicky…it definitely goes hand in hand with having a brother with autism
(F2l)
As demonstrated by figure 3.1 below, the participants experienced a number of
challenges growing up which were related to their sibling’s ASD. In this sample, it
was evident that negative experiences appear to outweight the positive.
Figure 3.2: Overview of themes related ‘Impact on Self: Growing Up’
Positive
Impact
Negative
Impact

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2. Impact on Family
Table 4 summarises the main themes and frequencies on the topic of impact on
family.
Table 4: Frequency of themes related to impact on the family
Theme Example %
Disruptive family
environment
Our whole family life is kind of based around him, and
that’s not a bad thing I’m just saying that everything has to
be taken into consideration. (F7m)
43
Reduced family
attention/
activities
Maybe sometimes siblings might think that they’re not
getting enough attention from their parents but siblings
with autism do need that bit of extra attention I think just to
help them get along. (F5l)
36
Tension/ Need to
placate
You can’t just change something dramatically in the house
because it would make him upset. (F3l)
28
Disruptive family environment
Almost half of the interviewees (43%) referred to the disruptive impact of their
sibling on the family. Some commented that their family life was structured around
their sibling’s autism:
You have to alter your daily schedule round maybe how he’d go to school…
just in general running everything, because I feel there’s no break in the
house. (M5m)
Others commented on how their sibling’s dislike for change or obsessions with
routine meant that family life was often rigidly structured.
Someone always needs to be in the house at certain time so really your
routine cannot change. Like he doesn’t want his routine to change, so by
default yours can’t either. So I suppose there was never really any
spontaneity in the family. (F7m)
Tension / Need to Placate
Some participants (36%), particularly those who characterised their sibling’s autism
as moderately severe, noted that there was an omnipresent tension within the family
home that resulted from their sibling’s autism.
Obviously it would have been very different [if he were not autistic]… inside
the house it would have been a much less intense atmosphere. (M5m)
Other participants noted that adjustments were often made to appease the
demanding needs of their siblings.

18
Things have to be ‘just so’. If it doesn’t agree with him, like if I had my light
on in my room after a certain time and he doesn’t want that light to be on,
then the light has to go off. (F7m)
Reduced family attention/activities
Four participants (28%) believed that their sibling received disproportionately more
attention from their parents. However this did not appear to result in resentment
toward their sibling. In commenting on this, one participant reflected understanding
of their parents’ perspective that they attributed to their own greater maturity now.
I think when I was younger I probably would have said I didn’t get enough
attention from my parents, just because I felt that he was like their main
priority, which he was at the time and I can fully understand that now. (F2l)
However some participants also mentioned how regular family excursions or
activities were hindered because of their siblings’ autism.
I think my parents have always been quite tied to the house. We could never
really go on a family holiday or anything (F9m)
Figure 3.3 below represents the negative impact which ASD can have on the family
environment.
Figure 3.3: Overview of factors related to ‘Impact on Family’
Impact on
Family:
Negative
Reduced
attention/
activities
Disruptive
home
environment
Tension/
Need to
placate

19
3. Current Relationship
Table 5 summarises the main themes and frequencies on the theme of current
relationships.
Table 5. Frequency of themes related to aspects of the current relationship
Theme Example %
Limited time
together
College takes up a lot of my time. So I’d have a long time
away from him. (M2l)
72
Acceptance
Your sibling is your sibling. You should just try your best to
get on with them. (F4l)
65
Close bond
We’re very close I suppose… yeah we get on and I like that I
can talk to him, I don’t really see him as someone with
autism, I just see him as my brother. (M4l)
65
Wishful
thinking
Without autism he’d be grand and be able to off by himself
or whatever, even socialize with friends. Sure he could be
preparing for college potentially next year. (M5m)
28
Limited time together
Ten participants (72%) felt they currently spend less time interacting with their
sibling compared to what they would have in the past, primarily due to them living
away from home for college.
I would have spent more time with him in the past. It’s just the fact that I’m
down in college and assignments and that. (M4l)
Some denoted their sibling’s reclusive demeanour as a hindrance to spending more
time together:
I’d like to spend more time with him but he doesn’t spend more time with us,
he’s not very sociable. (F4l)
For others, the lack of reciprocity in the sibling relationship was seen as
problematic, and this was more likely for siblings with severe autistic symptoms.
I wouldn’t really have spent that much time with him… you wouldn’t really
get that much of a response out of him so I’d kind of leave him to his own
thing. (M5m)
Close bond
A significant proportion of the interviewees (65%) conveyed a sense of intimacy in
their relationship with their sibling, more likely where autism symptoms were mild.

20
We’re very close I suppose… yeah we get on and I like that I can talk to
him, I don’t really see him as someone with autism, I just see him as my
brother. (M4l)
Participants also ascribed value to the joint activities that they did with their sibling,
as it offered a means of interaction.
You can find something that you have in common, that you both like to do
and that you both enjoy so you can kind of just do that together. (F3l)
Acceptance of their sibling
It was particularly noteworthy that 65% of the participants stated that they were
accepting of their brother/sisters condition and the life circumstances which they
encounter, although this was not always easy. For many, the process of acceptance
was seen as a journey in which they had to overcome hardships in the past.
When I was about 16 I realised that he’s my brother and I kind of have to
accept him or else I’m kind of not ever going to be comfortable with him.
(F2l)
I just guess you kind of have to accept the way they are and everything… I
know it can be hard sometimes but you just kind of have to accept it and get
on with it (F5l)
Again, such comments were more likely among those whose siblings’ symptoms
were relatively less severe.
Wishful Thinking
Though the majority of participants expressed satisfaction with their sibling
relationship, three participants (21%) engaged in ‘what-if’ thinking about how
things may have been different if their brother/ sister wasn’t on the ASD spectrum.
Obviously things would have been very different. Sure I would probably be
going to the pub with him at this stage… but that will never happen
unfortunately. (M5m)
Both the positive and negative aspects of the current TD-ASD sibling relationship
are demonstrated by figure 3.4.

21
Figure 3.4: Overview of factors related to ‘Current Relationship’
4. Impact on Personal Development
Positive psychological impact
There were a range of perceived positive outcomes for the participants that related to
their experiences of growing up with an autistic sibling, which are summarised in
Table 6.
Table 6. Traits associated with autism related experiences
Positive Traits Frequency %
Maturity 8 58%
Empathy 7 50%
Patience 6 43%
Awareness 4 28%
Tolerance 3 21%
Selflessness 2 14%
A substantial proportion of the interviewees believed that their experiences of
growing up with an autistic sibling has made them more mature (58%)
It’s really like matured me an awful lot quicker I’d say, it has been really
good for me from a young age when I was minding [Name], looking after
him. (F8l)
Half the interviewees (50%) felt they developed a greater sense of empathy, while
43% mentioned patience as another enhanced trait. It was noteworthy that
Current
Relationship
Positive
Aspects
Acceptance
Close Bond
Negative Aspects
Wishful
Thinking
Limited time
together

22
development of these traits appeared to be irrespective of whether their sibling’s
autism severity was classified as moderate or low.
I think it’s taught me a lot of things about other people’s children, like I’m a
lot more patient with children in general because of [Name]. (M2l)
I think definitely growing up with a family that wasn’t considered normal
has made me consider other people and their experiences and how their
lives might be hard. (F7m)
Some interviewees spoke of an enhanced sense of awareness (28%) of not only
autism-related issues but other forms of disabilities.
I actually notice a lot more people with autism now… I could tell straight
away if they had autism. But even all other disabilities as well, you can
almost see the struggles that those families go through in dealing with those
disabilities. (M1m)
Three participants (21%) mentioned that they felt their tolerance levels had
increased, while others interviewees pointed to becoming more selfless as a result of
caring for their brother/sister.
I think because of [Name], I am a much more caring person. I don’t know,
people say that to me, that I’ll pick up on stuff quicker… I think I’m better at
reading people because of him. (F6l)
One participant encapsulated the findings of developed positive traits by describing
how the experience has helped shape her personality.
I think it’s kind of shaped my personality a lot, like I suppose there would be
a lot of qualities that I have now that I wouldn’t have if [Name] wasn’t my
brother. (F7m)
Influence on life choices
Interestingly, a four interviewees (28%) mentioned that their experiences of growing
up with their autistic sibling have helped to shape their career path.
I’ve always said that I wanted to work with children with autism…so I’m
grateful that I’ve had the experience with [Name], that it’s made me come
so far in terms of working in my job. (F4l)
Negative psychological impact
For some participants, their experiences with their autistic sibling have had a
negative impact. One participant described how she needed counselling for her
anxiety.

23
I suffer from anxiety attacks because of it (growing up with an autistic
sibling)…it definitely goes hand in hand with having a brother with autism.
(F2l)
Both the positive and negative outcomes experienced by the participants form an
overarching theme of ‘Personal Development: Benefits vs Costs’. Figure 3.5
illustrates that the perceived benefits that are associated with ASD-related
experiences are balanced by the psychological costs of dysfunctional outcomes.
Figure 3.5: Overarching theme of ‘Personal Development: Benefits vs Costs’
5. Future Concerns
Table 7 summarises the themes relating to the participants’ concerns regarding the
future.
Table 7. Illustrative quotes and frequency of themes relating to ‘Future Concerns’
Theme Example %
Family
discussions
I don’t discuss it too much with my dad because he’s a bit
like me. If I was nervous about it he will be too. So it’s kind
of a dangerous topic. (F8l)
100
Future
residence
I don’t want him to be just thrown in somewhere… I just
want him to be happy and safe. (F8l)
58
Lack of
services
There’s not a lot of services for people like me… I don’t
think there’s an outlet for us to share these concerns, like I
feel this is the first time that I’ve ever actually spoken to
someone about it. (F7m)
28
Benefits Costs
Need for
counselling
Negative
impact:
Anxiety
Influence on
life choices:
Career
Positive
psychological
traits

24
Family Discussions
There was a divide amongst the participants with respect to their openness or
willingness to discuss concerns regarding the future and their potential role in their
sibling’s lives. Half the participants (50%) mentioned that they have discussed such
matters with their parents.
Yeah I mean sometimes [I’ve discussed it with my parents], like in relation
to like where he is going to live. (F1l)
When my parents end up eventually going, like it will be my sister or it’ll be
myself who’ll be looking after him. So we still kind of discuss that, there’s
those kind of concerns. (M4l)
The other seven participants preferred not to discuss such matters, with some
considering it more constructive to ‘focus on the present’ rather than worry about
the future.
I try to not think about it… it’s just about living in the present really. (M2l)
No I think it’s something that we kind of avoid. (F4l)
Future Residence
A substantial proportion interviewees (58%) brought up the topic of their where their
sibling will live in the future. Some were comfortable with the notion of their sibling
living with them in the future.
I’ll always want him in my life so if it comes to the stage where he had to
move in with me I’d be totally ok with that. (F2l)
Others were more sceptical of the notion of caring for their sibling. One participant
considered the prospect of looking after their sibling as ‘daunting’.
It’s a daunting idea that you’d have to stay and also the responsibility of
taking on someone to care for…I guess my future is more shaped than I
would want it to be. (F7m)
Other participants stressed that there would likely be some form of third-party
involvement, not feeling that it was their responsibility. It was noteworthy that
participants who had ascribed their siblings autism as moderately severe were more
deflective of their potential caregiving responsibilities.
I don’t mean to be selfish or anything but to be honest I wouldn’t really see
it as my kind of problem… but obviously you know I do want to make sure
that there is something for him in later years. (M5m)

25
Lack of services
Notably, 28% of the interviewees expressed dissatisfaction with the level of services
or supports that were provided for their siblings.
Autism isn’t cared for as much as it should be… there wouldn’t be enough
SNA’s (Special needs assistants) for him, for everyone to get to secondary
school. (M2l)
Some interviewees also expressed their concerns over the lack of supports
specifically tailored for themselves.
I wish there was more, I feel that we have to go out seeking meetings and
seeking out plans for the future and I wish that it wasn’t so much an onus on
us. (F9m)
The participants’ experiences of vigilance over their sibling and expectations of
future care or involvement present the final overarching theme of ‘Responsibility’,
which will be discussed further in the discussion.
Figure 3.6. Overview of factors related to ‘Future concerns’.
Analysis of Quantitative Data
Due to space limitations, the analysis of quantitative data was limited but did yield
some key findings that were in conjunct with the aforementioned qualitative
findings. The quantitative data were analysed for correlations between autism
severity and relationship satisfaction. Fig. 3.7 presents the scatterplot.
Future
Concerns
Future
Residence
Family
Discussions
vs Neglect
Lack of
Services

26
Figure 3.7: Correlation graph of LSRS and ATEC Total Scores
Fig 3.7 depicts the relationship between sibling relationship quality and autism
symptom severity, as measured by the LSRS and ATEC total scores respectively.
The graph observed a linear trend of the data, an assumption for Pearson
correlations. The direction of the graph suggests a negative association. Using a one-
tailed Pearson correlation, a significant negative relationship was observed between
autism symptom severity and sibling relationship quality (r = -0.535; p<0.05). This
represents a moderately negative correlation, and the R squared value suggests that
28.6% of the variance in the total ATEC and LSRS scores was attributable to the
linear relationship between the variable. Overall, this significant correlation is telling
of the impact autism severity can have on the quality of the sibling relationship and
further highlights the challenges that the participants face in terms of forming a
healthy bond with their autistic sibling.
0
10
20
30
40
50
60
70
80
90
100 120 140 160 180 200 220 240
ATECTotalScores
LSRS Total Scores

27
Coping Strategies
Fig. 3.8 summarises the quantitative data on the participants’ coping strategies.
Figure 3.8: Bar chart representing the brief COPE means.
An examination of the brief COPE means indicated that ‘Acceptance’ was the most
common coping strategy used by the participants in terms of their life experience of
growing up with an autistic sibling. This further emphasises the value of acceptance
for maintenance of the sibling relationship and the participants’ capacity to adapt to
their challenging life circumstances. There was low incidence among this sample of
negative coping behaviours such as substance abuse.
Summary of the findings
The ﬁndings in this study offer insight into the perceptions and experiences of
having a sibling with ASD from the perspective of typically developing young
adults. Regarding their experiences from growing up, there was tension between the
challenging experiences presented by the participants and their positive experiences
with siblings. Some of these challenges have persisted into adulthood, although
emphasis was placed on acceptance of autism and the positive aspects of the
relationship. This is further reflected by the perceived development of altruistic traits
that were associated with experience related to ASD. However, there was also
2
3
4
5
6
7
8
MEANSCORE
BRIEF COPE STRATEGIES

28
evidence of negative outcomes for these participants, which included anxiety and
concerns. With regard to these concerns, there was variance among the participants
in how they discussed such matters, dissatisfaction with services and uncertainty
over their siblings’ future. The overarching themes identified during the analysis will
now be discussed in the discussion.

29
Chapter 4
Discussion
This study aimed to explore the experiences and concerns of young adults who have
a sibling on the ASD-spectrum using a qualitative approach supplemented by
quantitative measures. The model below presents on overview of overarching themes
which were evident throughout the data and are discussed in detail below.
Figure 4.1: Conceptual model: Overarching themes, impact over time.
Normalisation
Throughout the data the participants’ portrayed acceptance of their sibling, linked
with efforts to ‘normalise’ their challenging circumstances. Positive acceptance may
be a coping mechanism promoted by parents among TD siblings to help them to
•Vigilance over sibling
in past
•Caregiving
expectations
•Altruistic qualities
VS Negative
psychological impact
•Challenging
experiences growing
up
•Negative impact on
family life
•Acceptance/
Closeness
•Coping Mechanism
Normalisation Vulnerability
Responsibility
Personal
Growth:
Costs vs
Benefits

30
accept and tolerate their difficult experiences. However, it cannot be assumed that
the participants’ adaptation to difficult circumstances entails a lack of distress, as
some of the participants explicitly commented that their siblings’ behaviour was at
times ‘hard to deal with (M5m)’. It is important to note at this point that previous
research has suggested that siblings of persons with ASD are at an increased risk of
poorer psychosocial outcomes (e.g. Barak-Levy et al., 2010). Thus, the participants’
tendency to ‘normalise’ their experiences in the present study may most usefully be
conceptualized not as the absence of distress, but rather as a state of coping and
evidence of adaptation to challenging circumstances.
Personal Growth: Benefits vs Costs
Despite the challenges which siblings often encounter in their childhood experience,
the data revealed patterns of positive altruistic outcomes for them. These included
increased empathy, personal maturation, tolerance and an increased capacity for
altruistic behaviours in general, which is in line with previous research indicating
positive outcomes for those who have siblings with ASD (Vertre, Roeyers and
Buysse, 2003; Mack and Reeves, 2007). The development of such positive traits
points to the resilience of TD siblings in adapting to their challenging family
circumstances. However, it cannot be assumed that the development of such
altruistic traits necessarily involves an overall positive psychosocial experience for
these participants, as there may be a psychological cost, for some participants at
least, in terms of increased levels of anxiety and distress resulting from their
siblings’ behavioural or functional impairments. Overall, the result shows a need for
greater awareness of both the positive and negative effects on TD siblings of
growing up with a brother/sister with autism.
Vulnerability
As was noted above, typically developing children with an autistic sibling experience
exposure to difficult behaviours and circumstances in their childhood and
adolescence. Examples of such challenging experiences which render TD siblings
more vulnerable to negative outcomes are demonstrated by figure 4.2 below.

31
Figure 4.2: Factors related to the overarching theme of ‘Vulnerability’
Despite the finding that some siblings with autistic family members may be at
increased risk for negative outcomes, most participants presented positive depictions
regarding their current relationship and personal outcomes. It may be that, for those
whose sibling’s autistic symptoms are mild, or who are themselves adequately
supported and protected by their parents in childhood, they are more likely to be in a
position to extract gains such as patience and empathy, and becoming more resilient
as a result of their experience. On the other hand, where their sibling’s symptoms of
autism are severe, there may be a greater risk of significant costs, in terms of distress
and anxiety, that do not simply resolve on leaving the family home and sibling with
ASD. This might become more apparent at the point of moving on to adult
independence, and such siblings might benefit from help addressing these issues.
Responsibility
In terms of growing up with autism in their family, participants frequently referred to
the responsibility they had assumed in childhood for their autistic sibling. Such
responsibility was perceived as burdensome by some, which may be accompanied by
an underlying sense of resentment toward their sibling with ASD, which is supported
by the findings of Benderix & Sivberg (2007). During childhood, the sibling of a
child with autism may feel that s/he needs to take on a caring role for their
brother/sister with ASD and as a result may suffer a loss of childhood (F2l)’. It is
Vulnerability
Perception
of others
Anxiety/
Distress
Reduced
parental
attention
Tension
Disruptive
family life
Aggression

32
possible that these siblings may be afraid of voicing their own needs for fear of
overburdening the parents. This burden of responsibility may in turn have a negative
impact on the sibling relationship and indeed on the prospect of their future
caregiving. Under current circumstances as adults, the participants were aware of the
prospect of being responsible for their sibling in the future, and were also aware in
some cases of their parents’ expectations that they would ‘take over’ as carers.
Overall, the responsibility which typically developing adults have for their sibling
with ASD highlights the atypical nature of the sibling relationship and in many cases
will profoundly shape their future involvement in their siblings’ lives.
Interpretation of findings in light of previous research
Challenges associated with growing up with autism presented in the current study
echo those of previous findings on young TD children with ASD siblings.
Bagenholm and Gillberg (1991) and Ross and Cullesky (2006) similarly observed
that such TD siblings often encounter aggressive behaviours during their childhood,
which can be particularly distressing. The present study also offered unique insights
into the challenges autism poses for the whole family, and amplifies the findings of
Petalas et al. (2009; 2012) showing that autism affects the family fundamentally
during TD children’s childhood and adolescence. Thus, the challenges associated
with autism are complex, expanding outwards from the person with ASD through the
parents, siblings and extended family, and can significantly affect family members
across various stages of the lifespan.
This study also explored the participants’ current relationship with their
sibling with ASD. Many commented on spending less time with their sibling
compared to the past, mainly due to college commitments, but in some cases this
may have been tinged with a sense of guilt at moving on and ‘leaving them behind’.
However, as was also noted by Cicirelli (1995), such moving on is a natural
progression for typically developing young adults in general.
There was also a degree of ambiguity surrounding the participants’ future
caregiving roles, demonstrated by the neglect of prospective issues regarding the
care and residency of the family member with ASD, which may be reflective of the
passive approach to such issues also seen in Irish families affected by ID (Seltzer,
Krauss, Gordon and Judge, 1997; Egan and Walsh, 2001). It is important to note that

33
the non-discussion of such matters cannot be interpreted simply as disregard or
neglect of the issue but may show that the participants favour denial or minimisation
as a coping strategy.
Participants in the present study also expressed dissatisfaction with the
services that are available to families with a member with ASD. Tozer and Atkin
(2013) have found similar levels of discontent among TD siblings of persons with
ASD, as was the case for Irish families affected by ID (e.g. Chadwick et al., 2013).
This emphasises the need for services both in helping typically developing children
to deal with their sibling’s autism when growing up, and currently as adults with
respect to their caring roles. As was noted by Li and Ping (2006), and supported in
the current study, that it is important to offer supports to these siblings early in
childhood, both in terms of addressing their own needs, and also because this may
alleviate some of the stress of feeling ill-prepared for the future.
Methodological strengths and weaknesses
The results of this study should be interpreted in the context of some methodological
issues. It must be recognized that this study reflects the views of only a small group
of participants, and thus their views may not be representative of all adult siblings
who have an autistic brother/sister. With respect to the use of standardised
measures, these measures were limited considering that they were not specifically
designed for this specific population group. For instance, the ATEC has been
described as a measurement that is more suited for children with ASD (Rimland and
Edelson. 1999), while feedback from the participants indicated that certain
statements on the brief COPE measurement were not applicable to their own lives.
Notwithstanding these limitations, this study also had methodological
strengths, which included the examination of a sample from a population which had
not been previously investigated, young Irish adults who have a sibling with ASD
and thus adds a developmental perspective to the current knowledge base on families
with ASD. Another key strength of this study was borne out in the use of
standardised quantitative measures, which helped to triangulate the findings and thus
provided a more comprehensive overview of the participants’ experiences. It may
also be useful for future research to utilise the standardised measures of the present
study on a larger scale.

34
Practical Implications
In practical terms, this study highlights the importance of supporting children and
young adults who have a sibling with ASD. It was noteworthy that these siblings
yearned for more sibling-oriented supports or services to help them cope both with
the challenges of living with ASD and to ease their concerns regarding their own
future responsibilities. Previous research has indicated that children who have a
brother/sister with ASD have benefited from support groups such as Sibshops (e.g.
Conway and Meyer, 2008) and it is therefore recommended that similar services be
provided for siblings of older age-groups. It might be beneficial for institutions with
large numbers of young adults such as UCD to consider offering networking among
young adults who had grown up with an autistic sibling. This could offer a practical
means for siblings to establish peer social support networks for sharing experiences
and expressing mutual concerns.
One of the major factors found to relate to the sibling relationship in both
childhood and adulthood was the severity level of the brother/sister’s autism. This
finding accords with previous research indicating that autism has a negative effect on
the sibling relationship (Orsmond and Seltzer, 2007; Aksoy and Bercin Yildirim,
2008). Thus, information on the severity of the sibling’s symptoms is vitally
important for mental health professionals, educators, and family members in order to
identify those children whose sibling’s behavioural problems are significant, in order
to offer them support and intervention to deal with their stress and anxiety before
potential problems develop. Interventions should aim to help siblings learn to
develop empathy and insight as a way of improving their understanding of their
sibling, and facilitating harmonious sibling relationships, to ensure good long term
outcomes for individuals with ASD and their sibling. Furthermore, promoting a
positive relationship in childhood has also been shown to increase the likelihood of
potential caregiving in the future, as demonstrated by Greenberg et al. (1999).
With respect to future roles of siblings, the non-discussion of important
issues regarding the residency and roles of participants created a sense of uncertainty
and unease about the future. Parents and professionals need to acknowledge
explicitly that TD siblings may envisage roles other than main caregivers for their
brother or sister in the future. Griffiths and Unger (1994) have shown that
communication between family members with respect to these issues corresponded
with increased TD siblings’ satisfaction regarding their future. Thus, future research

35
should explore the nature and role of communication between TD siblings and
parents in relation to the future care of their autistic brother/sisters. Increased
knowledge of communication patterns could enable future researchers to make
recommendations with respect to interventions to support families in this regard. On
a positive note, the findings also suggest that young adults who have a sibling on the
ASD spectrum show empathy, resilience and an ability to adapt to challenging
circumstances. This strengths-based perspective is important in terms of informing
service development as it suggests that negative outcomes for siblings should not be
assumed and there may be multiple strengths to build on. Future research should aim
to identify the factors that support the resilience and adaptation of these participants.
Conclusion
The current study provides valuable insights into the lives of young adults in Ireland
who have a brother or sister on the ASD spectrum. The results emphasise the
difficulties which these siblings faced when growing up with an autistic brother or
sister, but also points to the resilience of these TD siblings in coping with these
challenges. The difficulties and stresses they identified also point to the need for
greater supports for typically developing siblings of autistic individuals during
childhood in order to buffer their vulnerability to negative psychological outcomes.
Finally, the results indicate that supports are also needed to facilitate them and their
parents in planning for their brother’s or sister’s future needs, and, indeed, the role
which these young adults will play in their lives of their autistic brother or sister in
the future.

36
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40
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41
Appendices
Appendix A: Interview Protocol
Prior to commencing the interview session
 Introduce myself and tell the sibling a little about the interview process.
 Obtain consent from the sibling and assure them regarding confidentiality,
including that all names will be replaced with aliases in the transcripts.
 Set up the required equipment and ask if the sibling is ready to begin.
A. Introductory questions and Sibling's concept of autism
1. I'd like you to tell me what you know about autism -how would you describe
autism to someone who had never heard it before?
2. How do you think that things would be different for Name if he/she didn't have
autism?
-What kind of stuff do you talk about?
B. Sibling relationship
1. Can you tell me a little about what it's like to be Name’s brother/ sister?
o Is there something you really like about Name?
o Is there something you find difficult/ that bothers you about…..?
2. How much time do you spend with Name?
o (If not much) why do you think that is?
o Did you used to spend more or less time together in the past? - (If yes
- why do you think that was?)
3. What's it like for you when your friends meet Name?
o Prompt – can you tell me a little more about that?
4. What good/ or fun things have happened to you with Name Recently?
5. What things have been difficult for you recently?
6. What kind of things do you do together?
7. Is there something you like doing best with Name?
8. Is there something you don't like to do with Name?
9. Is there anything you wish you could do with Name?
o If Name were not on the ASD spectrum, what other things would you
do together?
o Is there anything you wish you could change for Name?
10. What advice would you give to other brothers/ sisters of siblings with
autism?

42
C. Impact on their lives
1 Do you think that your experience of growing up with your bother/sister has
impacted on your life outside the family home? Positive impact? Negative
Impact?
2 Do you think having an autistic brother or sister has had any impact on your
decision-making or life choices?
3 Is there any part of your life that you feel might have been different if your
brother or sister was not autistic?
4 What do you think are the main issues of growing up with a brother or sister
with autism that have impacted on your life the most?
D. Future Roles in Sibling’s Life
1 Are there any thoughts or concerns that you would like to share regarding the
future?
2 What kind of role do you think you will have in your brother/sisters life?
3 Do you ever worry about what might happen in the future? About your
parents, your sibling or even yourself?
4 Do you ever talk to your parents about what might happen in the future?
5 Is there anything else you would like to share regarding the future care of
your brother/sister?
Would you like to add any other comments (prompt: or are there any other questions
that you think I could ask people like you about growing up with a brother/sister
with autism?
At the end of the interview
 Retell the story of the sibling in summary form emphasizing the positive
features of both the sibling and the child with autism.
 Thank the sibling for sharing his/her experiences with you.
* The interviewer will have obtained information on the terminology used within the
home and between family members to refer to the condition of the child with autism.

43
Appendix B: Autism Treatment Evaluation Checklist

44
Appendix C: Permission granted to use Lifespan Sibling Relationship Scale
09/10/2015
[Researcher’s Name] < [Name]@ucdconnect.ie>
To hriggio <hriggio@calstatela.edu>
Dear Prof. Riggio,
I am a final year Psychology undergraduate in University College Dublin engaging
in an Undergraduate Research Project investigating young adults’ experiences and
perceptions of growing up with an individual with Autism Spectrum Disorder
(ASD). I'm very interested in using the Lifespan Sibling Relationship Questionnaire
in assessing the relationship these siblings have with their brother or sister diagnosed
with ASD. Would it be possible for me to procure the scale? I would be very grateful
if this were possible and, if not, would value your advice on any alternative source.
Kind Regards,
[Researcher’s Name]
12/10/2015
Riggio, Heidi <hriggio@exchange.calstatela.edu>
To Researcher <[Name]@ucdconnect.ie>
Hello [Researcher’s Name],
Thank you for your email. You have my permission to use the LSRS measure in any
research you are conducting. You may also translate it to any language. Attached
here are some relevant materials, please let me know if I can provide any other
assistance re: the measure.
Please also let me know the results of your research, I am very interested.
Best regards,
Heidi

45
Appendix D: Lifespan Sibling Relationship Scale (LSRS)
1 2 3 4 5
Disagree
strongly
Disagree Neither agree
nor disagree
Agree Agree
Strongly
1. I presently spend a lot of time with my sibling 1 2 3 4 5
2. My siblings and I were ‘buddies’ as children 1 2 3 4 5
3. My sibling makes me happy 1 2 3 4 5
4. My sibling and I spent time together after
school as children
1 2 3 4 5
5. My sibling is a good friend 1 2 3 4 5
6. I remember having a lot of fun with my sibling
when we were children
1 2 3 4 5
7. I never talk about problems with my sibling 1 2 3 4 5
8. My sibling did not like to play with me when
we were kids
1 2 3 4 5
9. I enjoy my relationship with my sibling 1 2 3 4 5
10. My sibling and I often helped each other as
children
1 2 3 4 5
11. My sibling is very important in my life 1 2 3 4 5
12. I was frequently angry at my sibling when
we were children
1 2 3 4 5
13. I call my sibling on the telephone frequently 1 2 3 4 5
14. My sibling and I were important to each
other when we were children
1 2 3 4 5
15. I’m proud of my sibling 1 2 3 4 5
16. My sibling and I often had the same fiends
as children
1 2 3 4 5
17. My sibling and I are not very close 1 2 3 4 5
18. I enjoyed spending time with my sibling as a
child
1 2 3 4 5
19. My sibling and I borrow things from each
other
1 2 3 4 5
20. My sibling knew everything about me when
we were kids
1 2 3 4 5
21. My sibling’s feelings are very important to
me
1 2 3 4 5
22. My sibling and I did not spend a lot of time
together when we were children
1 2 3 4 5
23. My sibling is proud of me 1 2 3 4 5
24. I remember feeling very close to my sibling
1 2 3 4 5
25. My sibling talks to me about personal
problems
1 2 3 4 5
26. My sibling had an important and positive
effect on my childhood
1 2 3 4 5
27. My sibling and I have a lot of fun together 1 2 3 4 5
28. My sibling and I shared secrets as children 1 2 3 4 5
29. I know that I am one of my sibling’s best
friends
1 2 3 4 5

46
30. My sibling bothered me a lot when we were
children
1 2 3 4 5
31. My sibling and I ‘hang out’ together 1 2 3 4 5
32. My sibling and I liked all the same things
1 2 3 4 5
33. I like to spend time with my sibling 1 2 3 4 5
34. My sibling looked after me (OR I looked
after my sibling) when we were children
1 2 3 4 5
35. My sibling and I have a lot in common 1 2 3 4 5
36. I was proud of my sibling when I was a child 1 2 3 4 5
37. My sibling and I do a lot of things together 1 2 3 4 5
38. My sibling and I were very close when we
were children
1 2 3 4 5
39. My sibling frequently makes me angry 1 2 3 4 5
40. My sibling and I often played together as
children
1 2 3 4 5
41. I believe I am very important to my sibling 1 2 3 4 5
42. I remember loving my sibling very much
when I was a child
1 2 3 4 5
43. My sibling and I share secrets 1 2 3 4 5
44. My sibling and I had a lot in common as
children
1 2 3 4 5
45. I admire my sibling 1 2 3 4 5
46. I talked to my sibling about my problems
1 2 3 4 5
47. My sibling is one of my best friends 1 2 3 4 5
48. My siblings made me miserable when we
were children
1 2 3 4 5
49. Were you raised with this sibling? Yes No
50. Do you currently reside with this sibling? Yes No

47
Appendix E: Brief COPE
I have
not been
doing
this at all
I’ve been
doing this
a little
I’ve been
doing this
a medium
amount
I’ve been
doing
this a lot
1. I've been turning to work or other
activities to take my mind off things.
2. I've been concentrating my efforts on
doing something about the situation I'm
in
3. I've been saying to myself "this isn't
real."
4. I've been using alcohol or other drugs to
make myself feel better.
5. I've been getting emotional support
from others
6. I've been giving up trying to deal with it
7. I've been taking action to try to make
the situation better
8. I've been refusing to believe that it has
happened
9. I've been saying things to let my
unpleasant feelings escape
10. I’ve been getting help and advice from
other people
11. I've been using alcohol or other drugs to
help me get through it
12. I've been trying to see it in a different
light, to make it seem more positive
13. I’ve been criticizing myself
14. I've been trying to come up with a
strategy about what to do.
15. I've been getting comfort and
understanding from someone.
16. I've been giving up the attempt to cope.
17. I've been looking for something good in
what is happening.
18. I've been making jokes about it.
19. I've been doing something to think
about it less, such as going to movies,
watching TV, reading, daydreaming,
sleeping, or shopping.
20. I've been accepting the reality of the fact
that it has happened.
21. I've been expressing my negative
feelings.
22. I've been trying to find comfort in my
religion or spiritual beliefs.
23. I’ve been trying to get advice or help
from other people about what to do.
24. I've been learning to live with it.
25. I've been thinking hard about what steps
to take.
26. I’ve been blaming myself for things that
happened.
27. I've been praying or meditating.
28. I have been making fun of the situation

48
Appendix F: Consent form for participants
Research Topic: The perceptions, experiences and roles of young adults who
have a sibling diagnosed with autism spectrum disorder.
Consent Form for Participants
Please make sure that you have read the information sheet carefully before signing
this form.
 I am aware that the research is being carried out by [Researcher’s Name],
under the supervision of Dr Tina Hickey from the UCD School of
Psychology.
 I understand why this research is taking place and that I am being asked to do
an interview and questionnaire.
 I have had time to consider whether I want to take part in this research
project and any questions that I had were answered satisfactorily.
 I understand that my participation is entirely voluntary and that there will be
no repercussions if I decide not to participate.
 I understand that the data collected via the questionnaires and the interview
transcripts will be transferred to a password protected computer and stored
confidentially. Only the researcher and the supervisor will have access to the
data. I understand that the data will be archived within the UCD School of
Psychology for a period of up to five years unless I indicate otherwise.
 I understand that the information collected may be presented and/or
published in articles and at conferences, but that no individual young person
will be identifiable from the information.
Please tick I agree to take part now and to archiving my data [ ]
I agree to take part now [ ] but I do not wish to have my data
archived
Your Name (block letters) ___________________________
Your Signature _________________________ Date _____/_____/_____
UCD School of Psychology
Newman Building
University College Dublin
Belfield, Dublin 4, Ireland
T: +353 1 7168408
F: +353 1 7161181
Scoil na Síceolaíochta UCD
Áras Newman
An Coláiste Ollscoile, Baile Átha Cliath
Belfield, Baile Átha Cliath 4, Éire
www.ucd.ie/psychology

49
Appendix G: Letter of ethical approval
04/12/2015
Dear [Researcher Name],
I am in receipt of your amended and signed application for ethical approval for your
research project for the BA Degree. The committee is happy to grant ethical approval
for this project.
Your research ethics approval number is UREC-SPsy-15-Corboy.
You may proceed to collect your data.
Best wishes,
Dr Joan Tiernan,
Reg Work & Org. Psychol., C. Psychol
School of Psychology
Chair UREC-SPsy
Chair Human Research Ethics Committee - Humanities, UCD
Chair Coaching Psychology Group (of DWOP)
Chair 18th EAWOP Congress 2017

50
Appendix H. Information sheet for Participants
Information Sheet for Participants
Research Study Title: Exploring the perceptions, experiences and roles of young
adults who have a sibling diagnosed with autism spectrum disorder
Researcher [Name] Supervisor: Dr. Tina Hickey
What are the aims of the study? This study aims to explore the thoughts and
experiences of young adults who grew up with a brother or sister with autism (ASD).
It will look at how this impacted on the young adults in the past, and ask for their
views regarding care issues in the family now and in the future.
Why have I been invited to take part? You have been invited to take part because
you are aged 18 years or over and do not yourself have a diagnosis of ASD, but do
have a sibling with diagnosed autism.
What happens if I take part? If you decide to take part, you will be asked to select
an interview time (from a number of slots) that is convenient for you and the
interview will take place on campus, or a public venue convenient to you. Before
the interview you will be asked to complete a survey with some basic information
about you and your sibling. When you have completed this form, which you may
complete either online or in hardcopy, the interview will commence and you will be
asked some questions about your experiences of growing up with your brother or
sister who has ASD, how you feel it has impacted on you and your family in general
terms, how you would describe your relationship with your autistic sibling and any
thoughts or concerns you may have for the future. After the interview you will be
offered some refreshments while you complete a survey that has been used in other
studies internationally looking at the relationship you have with your brother or
sister with autism and the impact they have had on your life. This will allow for
comparisons with other studies.
What will happen to the results of the study? The data collected in this study will
form the basis of my thesis on this topic, and will be written up for examination
purposes. The data may also be used in future research articles and presentations, but
at no time will any individual be identifiable.
Confidentiality/Anonymity Nobody will be able to identify you from what is
written in my thesis or publications. Anything that you write or speak will remain
completely confidential. I will be the only person who will know what you have said
in the interview. Your interview will be transcribed and will be assigned an ID code
UCD School of
Psychology
Newman Building
University College Dublin
Belfield, Dublin 4, Ireland
T: +353 1 7168408
F: +353 1 7161181
Scoil na Síceolaíochta UCD
Áras Newman
An Coláiste Ollscoile, Baile Átha Cliath
Belfield, Baile Átha Cliath 4, Éire
www.ucd.ie/psychology

51
to replace your name, and any potential identifying information about locations or
people will be removed or generalised. This code will also be used on your
questionnaire data. The key that links your name with your code will be stored only
on my Supervisor’s computer, separately from your data, and this code-key will be
destroyed after two years. The interview recordings will be stored only under your
code, and will be password protected. These recordings will only be stored until the
end of the examination process for my thesis, and will only be accessible to me and
my Supervisor and potentially the external examiners. Once the exam process is
complete, the recordings will be deleted, but the anonymised transcript with all
identifiers removed will be retained and stored on a password-protected computer for
up to five years, or archived, depending on your wish.
Do I have to participate in this study? No, it is entirely your choice. If you do
choose to take part, you can also change your mind at any time. If you do not feel
comfortable answering a question during the interview you may state that you do not
wish to answer and there will be no need to provide an explanation.
Are there any benefits to taking part? There will not be any direct benefits, but
the topic may be of personal interest to you, and the information you share will help
to further our understanding of what it is like to grow up with a brother or sister with
autism from the unique perspective of those who have lived with their autistic sibling
throughout the majority of their lives. This will be the topic of my thesis and
possibly international journals discussing the experiences of Irish adults growing up
with an autistic brother or sister. If you are interested in seeing the final findings, a
copy of the final results can be made available to you.
Further Information: If you have any questions or queries about the research study,
please feel free to contact me ([Name]@ucdconnect.ie) or my supervisor [supervisor
email]
Thank you very much for taking time to read this Information Sheet
Student helplines
In the interests of providing support to all students, UCD is running the ‘Please Talk’
campaign. Please note the contact details for the confidential student service Niteline
(1800 793 793 ; www.niteline.ie). Also, further information regarding student
services in UCD is available at www.pleasetalk.ie/ucd and
www.ucd.ie/studentcounselling.

52
Appendix I. Coding Frame
+Theme Sub theme Code
1.
Understanding
of autism
1. Disability
2. Impact on social ability/ Communication deficits
3. Routine-like behaviours
4. Difference/Not a disability/Normality
1: Aut-Dis
2: Aut-Social
3: Aut-Rout
4: Aut-Norm
2.
Impact on Self-
Growing up
1. Encounters with friends
2. Perception of others/ Social Comparisons
3. Positive memories
4. Sense of responsibility/ Lost childhood
5. Aggression
6. Anxiety/Distress
7. Learning to accept
8. General/ Negative
1: Imp-Friends
2: Imp-Pot
3: Imp-Pom
4: Imp-Resp
5: Imp-Anger
6: Imp-Anxiety
7: Imp-Learn
8: Imp-Neg
3.
Current
Relationship
1. Limited time together/ Separate lives
2. Acceptance of their sibling
3. Current responsibility
4. Close bond/ Shared activities
5. Atypical sibling relationship/ Role model
6. Lack of reciprocity in relationship
7. Wishful thinking
8. Avoidance/ Embarrassment
9. Appreciation of sibling qualities
1: Cur-Time
2: Cur-Accept
3: Cur-CResp
4: Cur-Cb
5: Cur-Atyp
6: Cur-Rcp
7: Cur-Wish
8: Cur-Avoid
9: Cur-Qual
4.
Impact on
Personal
Development
1. Greater Patience / Tolerance
2. Maturity/ Increased Empathy/ Selflessness
3. Enhanced awareness of disability
4. Influence on LIFE/career choice
5. Negative: Anxiety/Need for counselling
6. Minimal impact
1: Pd-Pat/Tol
2: Pd-Mat/Emp
3: Pd-Aware
4: Pd-Life/cc
5: Pd-NEG
6: Pd-Min
5.
Impact on
Family
1. General
2. Tension/ Need to placate
3. Denial
4. Disruptive family environment
5. Concern for Parents
6. Care arrangements
7. Reduced family attention/activities
8. Burden sharing-benefits of other siblings
1: Fam-Gen
2: Fam-Tense
3: Fam-Deny
4: Fam-Disrupt
5: Fam-ConPar
6: Fam-Arrange
7: Fam-Att
8: Fam-Sibs
6.
Future Role
1. Avoidance/Not feeling responsible
2. Occasional involvement
3. Supportive/ Positive Relationship
4. Potential Caring Role/Accept Responsibility
5. Parental expectations
6. Concern for Future
1: Role-Avoid
2: Role-Occ
3: Role-Supp
4: Role-Care
5: Role-Expect
6: Role-Conc
7.
Future concerns
1. Family discussions
2. Future residence of sibling
3. Lack of services
4. Parental concerns
5. Pessimism/Optimism
6. Concern for Welfare of parents
7. Non-discussions/neglect of issues/ Uncertainty
1: Con-Disc
2: Con-Res
3: Con-Serv
4: Con-PCon
5: Con-PesOpt
6: Con-ParWell
7: Con-Neg
9.
Wishes for
sibling
1. Future Independence /Employment
2. Future romance/Improved social capabilities
3. Well-being in general
4. Provision of ‘Home-like Care’/non-institutional
1: Wish-Indp
2: Wish-Soc
3: Wish-Well
4: Wish-Home

53
Appendix J: Test reliabilities for standardised measures
Measure Reliability
ATEC (full) scale 0.94
Speech/Language/Communication 0.92
Sociability 0.80
Sensory/Cognitive Awareness 0.87
Health/Physical Behaviour 0.88
LSRS (full) scale 0.94
Adult Child
Cognition 0.77 0.84
Behaviour 0.83 0.75
Affect 0.87 0.88
COPE (full scale) 0.95

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