Journal of Family Psychotherapy

ISSN: 0897-5353 (Print) 1540-4080 (Online) Journal homepage: https://www.tandfonline.com/loi/wjfp20

A phenomenological content analysis of online

support seeking by siblings of people with autism

Rachael A. Dansby, Brie Turns, Jason B. Whiting & Jeffrey Crane

To cite this article: Rachael A. Dansby, Brie Turns, Jason B. Whiting & Jeffrey Crane (2018) A
phenomenological content analysis of online support seeking by siblings of people with autism,
Journal of Family Psychotherapy, 29:3, 181-200, DOI: 10.1080/08975353.2017.1395256

To link to this article: https://doi.org/10.1080/08975353.2017.1395256

Published online: 28 Nov 2017.

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JOURNAL OF FAMILY PSYCHOTHERAPY
2018, VOL. 29, NO. 3, 181–200
http://dx.doi.org/10.1080/08975353.2017.1395256

A phenomenological content analysis of online support

seeking by siblings of people with autism
a b c
Rachael A. Dansby , Brie Turns , Jason B. Whiting , and Jeffrey Craned
a
Department of Community, Family, and Addiction Sciences, Texas Tech University, Lubbock, Texas,
USA; bDepartment of Marriage and Family Therapy, Fuller Theological Seminary, Phoenix, Arizona,
USA; cSchool of Family Life, Brigham Young University, Provo, Utah, USA; dDepartment of Counseling
Education and Rehabilitation, Fresno State University, Fresno, California, USA

ABSTRACT KEYWORDS
With the sharp increase in diagnosis rates of autism spectrum Autism spectrum disorder;
disorder, more family members are caring for and being raised family relationships; online
with individuals with autism. Although research has examined support seeking; qualitative
parents’ experiences of raising a child with autism, more content analysis; siblings’
experiences
knowledge is needed regarding neuro-typical siblings’ experi-
ences. One way to understand siblings’ experiences is to hear
their own recollections as shared through online peer forums.
The purpose of this phenomenological content analysis was to
understand the unfiltered experiences of neuro-typical adults
who grew up with a sibling with autism spectrum disorder as
they sought support online. Secondary analysis of online blog
posts generated four themes: Unique family relationships;
Complex spectrum of emotional experiences; Autism influen-
cing life trajectories; A spectrum of coping strategies. Results
provide useful implications for professionals working with
these families and for researchers studying autism.

Introduction
In the last decade, autism spectrum disorder (ASD) has become one of the
most widely talked about and fastest growing mental health issues in
childhood (Baio, 2014); this is in part because of the dramatic increase
in its diagnosis and prevalence. The prevalence rate is currently around 1
in every 68 children (Christensen et al., 2016), which suggests a high
likelihood that mental health professionals will work with a family raising
a child with ASD. Research shows that autism affects the entire family
(Lin, 2011; Ramisch, Onaga, & Oh, 2014), but most of the family therapy
research analyzing the interactions of families living with ASD focuses on
diagnosed children’s dynamics with the parental subsystem (e.g., Baker,
Blacher, Crnic, & Edelbrock, 2002) or parental stress and resiliency (e.g.,
Abbeduto et al., 2004; Lin, 2011), and some literature addresses the couple

CONTACT Rachael A. Dansby rachael.dansby@ttu.edu 1301 Akron Avenue, Department of Community,

Family, and Addiction Sciences, Texas Tech University, Lubbock, TX 79409, USA.
Color versions of the figure in the article can be found online at www.tandfonline.com/WJFP.
© 2018 Taylor & Francis Group, LLC
182 R. A. DANSBY ET AL.

relationship in light of ASD (e.g., Brockman, Hussain, Sanchez, & Turns,

2016; Ramisch, 2012; Ramisch, Timm, Hock, & Topor, 2013; Risdal &
Singer, 2004). Although some research has been conducted in the last
decade on sibling adjustment (e.g., Beyer, 2009; Corsano, Musetti,
Guidotti, & Capelli, 2016; Green, 2013), in general, the parents and
diagnosed child receive the majority of time and energy from mental
health providers, resulting in the neuro-typical (NT) sibling potentially
feeling excluded (Meyer & Holl, 2014).
Today, many turn to online discussion forums as an outlet to process their
experiences, to seek advice, and find community with others in similar
situations. This may be particularly true when they do not have access to
offline support (Pfeil, 2009). Siblings of children with ASD are no exception,
and some use online forums for self-disclosure and support-seeking, and the
peer nature of these online communities offers important insights into what
siblings think in a way that is different than how they may share their feelings
with researchers, mental health providers, and perhaps even parents.
For mental health providers who work with families, it is important to
increase knowledge of NT siblings’ experiences of being raised with a child
with ASD for several reasons. First, ASD affects all members of the family,
not just the diagnosed individual(s), and incorporating NT siblings into
treatment could make a meaningful difference in outcome. Second, under-
standing NT siblings’ experiences can improve clinicians’ sensitivity to the
unique issues that occur in these families, and will increase clinicians’ con-
fidence about conducting family therapy with all members. Siblings’ online
self-disclosures, advice-giving, and support seeking offer a window to these
experiences that is different than would be obtained in more formal clinical
or research settings, and helps outsiders understand the singular experiences
of this population. This study used qualitative content analysis with a trans-
cendental phenomenological lens to better understand the lived experiences
of siblings who were raised with a child with ASD.

Siblings of children with ASD

Existing research reveals a mixture of positive and negative experiences in the
relationship reported by NT siblings of children with ASD (e.g., Beyer, 2009;
Meyer & Holl, 2014; Corsano et al., 2016). The focus, and subsequently the
results, of many of these studies have concentrated on behavior problems
among children with ASD, the age of the child with the disability, gender of
the NT child, birth order, family size, family functioning, and in a few
studies, the severity of the child’s ASD diagnosis (e.g., Green, 2013; Harris,
2007). For example, if a child with ASD has difficulty developing emotionally
close relationships, how the siblings play, interact, and communicate may be
impacted (Green, 2013). Additionally, the severity of the child’s diagnosis
 JOURNAL OF FAMILY PSYCHOTHERAPY 183

may dictate the amount of time parents spend with the diagnosed child,
which may also influence the NT’s lived experiences (Harris, 2007).

Positive experiences
Sibling relationship
NT siblings have reported having multiple positive experiences while being
raised with a child with ASD. Many of these were related to their relationship
with their sibling, their personality traits, and the communication within the
family (Meyer & Holl, 2014; Turns, Eddy, & Jordan, 2016, Smock Jordan &
Turns, 2016). These often overlap, as the relationship is partially affected by
the sibling’s personality traits along with how the family communicates about
the child’s unique presentation of the diagnosis. Many siblings have reported
pride and appreciation toward their diagnosed brother or sister, enjoyed
spending time with them, and considered their sibling to be a close friend
(Angell, Meadan, & Stoner, 2012; Petalas, Hastings, Nash, Reilly, & Dowey,
2012). Some reported satisfaction in their ability to recognize their diagnosed
sibling’s emotions, such as sadness and frustration (Benderix & Sivberg,
2007), and others enjoyed educating and caring for their sibling with ASD
(Angell et al., 2012). Other siblings of children with ASD have reported
feelings of regret over the limited time they previously spent with their
sibling and began savoring memories with their sibling (Petalas et al., 2012).

Difficult experiences
Friend and peer relationships
While research documents the existence of positive experiences, many NT
siblings experience difficulties being raised with a family member with ASD,
including in their relationships with friends and peers. It can be tricky to
navigate peer relationships while living with a sibling with ASD. Benderix
and Sivberg (2007) found NT siblings had a limited number of friendships
and were often hesitant to invite peers into the family home. Some reported
being embarrassed and fearful of how their sibling would behave in public
(Angell et al., 2012). Bagenholm and Gillberg (1991) found three main
differences among siblings being raised with and without children with
ASD, which were more concerns with their own future, increased loneliness,
and more peer problems. These researchers found more than half of parti-
cipants could not describe why their sibling with autism was different from
others, and were not able to explain the diagnosis to peers.
184 R. A. DANSBY ET AL.

Family roles
Some NT siblings end up engaging in more of a parental role rather than
being able to fully enjoy their childhood (Bagenholm & Gillberg, 1991).
Others have reported feeling stressed by caregiving and protecting their
sibling from self-injurious behaviors (Benderix & Sivberg, 2007). Further,
many siblings have reported worrying about their brother’s or sister’s future
and how their parents will care for them (Benderix & Sivberg, 2007).

Mental health
In addition to increases in anxiety about caregiving and the future, some
siblings live with a deep sense of guilt (Opperman & Alant, 2003). NT
siblings also have higher levels of social isolation, loneliness, and depression
(Angell et al., 2012; Hastings, 2003). Even though it is challenging to distin-
guish which aspects of being raised with a sibling with ASD can be most
detrimental to a NT sibling’s mental health, some have reported negative
effects that they attribute to family dynamics from their parents. For instance,
some siblings have reported feeling neglected by their parents (Myers,
Mackintosh, & Goin-Kochel, 2009). Similarly, NT siblings have stated they
receive different consequences or punishments than their sibling with ASD
(Chan & Goh, 2014). As systemic clinicians, it is important to consider the
relationship parenting can have with children’s mental health and the sibling
bond. Because of the previously mentioned challenges, many siblings reach
out for support to others who are experiencing similar situations.

Support-seeking by siblings of children with ASD

Many siblings of a child with ASD use online forums as one source of social
support (Angell et al., 2012; Petalas et al., 2012). Online support-seeking is
often done through blogs or chat groups formed by other NT children who
have siblings with autism (Perez, 2008), and there are several documented
benefits of online support forums. First, online support groups remove
geographic and transportation barriers to attending in-person support
groups (White & Dorman, 2001). Also, the anonymity of online forums
provides a way for people to talk about sensitive topics, increasing the
potential for honest self-disclosure and recursive encouragement (Madara,
1997). Given this, it is likely that discussions between NT siblings include
open and honest disclosure about lived experiences as support is sought
from, and offered to others in similar situations.
 JOURNAL OF FAMILY PSYCHOTHERAPY 185

Purpose of the study

The purpose of this study was to increase understanding of how siblings
describe their experiences of growing up alongside a brother or sister with
autism. We defined “siblings’ experiences” as any behavioral, affective, existen-
tial, psychological, or spiritual descriptions of interaction, meaning, and effect
on self or other. Our specific research questions were: (1) What are the overall
experiences of siblings being raised with a child with an ASD? (2) How do NT
siblings describe their emotional experiences to online peers? (3) How do NT
siblings cope with the experiences of being raised with a child with autism?

Methods
To answer the research questions, we gathered posts from online blogs
written by siblings raised with a child with ASD, gathered between
September 30, 2015 and October 17, 2015. The data reflected a wide range
of experiences and responses typically found online and gave us the ability to
access a population that would be otherwise difficult to reach and interview
(White & Dorman, 2001). We analyzed blog posts using qualitative content
analysis with a transcendental phenomenological lens. This was done to
classify the material into categories of experiences with similar meanings
(Cho & Lee, 2014; Schreier, 2012; Smith, Flowers, & Larkin, 2009). Using a
transcendental phenomenology lens means we sought to understand the
essence of siblings’ experiences from multiple participants’ perspectives,
focusing on the textual and structural themes across their descriptions
(Smith et al., 2009). However, because this data did not have the depth of a
typical phenomenological study, we also used content analysis tools to sort
and categorize the data. In this type of data, which is broad and not deep, a
hybrid of content analysis and phenomenological methods can be used to
usefully represent these participants’ experience (Cho & Lee, 2014). This data
was a mix of some deeper recollections and reflections, along with shorter
comments and responses. Most original blog posts were three to seven
paragraphs, and associated comments were one to five sentences in length.

Theoretical and philosophical perspectives

Epistemologically, we approached this study from a subjectivist stance, which
asserts there is no distinction between “the knower and the known” (Daly, 2007,
p. 23). This informed our decision to use the social constructionist paradigm,
with suggests the research process and findings are a result of meaning-making
and interaction between the researchers and the data, ultimately generating one
of many possible representations of this phenomenon. Specifically, we focused
on the ways siblings constructed meaning about their experiences, while
186 R. A. DANSBY ET AL.

understanding that our findings are a product of how we make sense of these
descriptions (Creswell, 2013; Dahl & Boss, 2005; Daly, 2007).

Internet-based research and ethical issues

We used passive content analysis, meaning we studied the experiences
described by sibling bloggers without being directly involved in the discus-
sions (Eysenbach & Till, 2001). The blogs were available to the public via
Reddit.com and were not password protected (Ess, 2002; Markham &
Buchanan, 2012), qualifying the blog posts for analysis without participants’
informed consent or review. All users had previously set up an account with
Reddit.com and created a username to post blogs, so none of the writers or
respondents had their legal names attached to any postings. However, we
excluded all usernames as a measure of privacy protection (Creswell, 2013).

Sample
Our final sample consisted of 28 original blog entries, 37 stand-alone comments,
and 9 replies to other bloggers by the authors of original posts related to those blog
entries, posted by people who self-reported having a sibling diagnosed with
autism. This resulted in written contributions from N = 65 people. We chose to
only search Reddit for data, because there is an entire sub-Reddit page dedicated to
autism, which provided enough data focused on the primary research question for
the emerging categories to reach saturation of meaning. Due to the anonymous
nature of Reddit’s screen names, we were unable to gather demographic informa-
tion about the bloggers, therefore, we limited conclusions based on sample
characteristics. However, we were able to approximate that our sample ranged
in age from 17- to 31-years-old, and from context, we were able to determine that
the majority of bloggers/commenters were older than their siblings with autism.
Also, most (all but seven) reported their sibling with autism was male.

Procedure
After reading through all the available posts on the autism sub-Reddit, we
limited data selection on Reddit to blogs and comments directly addressing a
personal experience with a sibling with autism. We compiled all qualifying
posts and associated comments in a Word document for initial analysis. Also,
we kept all emergent codes, themes, and corresponding quotes in a password-
protected, view-by-invitation-only, online codebook for subsequent analysis.
 JOURNAL OF FAMILY PSYCHOTHERAPY 187

Trustworthiness
We followed several steps to enhance trustworthiness and rigor of this study.
Creswell (2013) recommends using a minimum of two possible procedures to
help form credible and rigorous findings. We used Lincoln and Guba (1985)
evaluation criteria for five dimensions: authenticity, credibility, conformabil-
ity, dependability, and transferability. Although we were unable to investigate
sample characteristics or revisit participants, we used established content
analysis methodology, multiple coders, and had ongoing discussions to
help create internal audits of the process and engender a reflexive environ-
ment about the researchers’ roles in interpretation and analysis. This was part
of a general commitment to authenticity, where we sought to represent a
variety of perspectives among siblings (Lincoln & Guba, 1985). Finally, when
using secondary data, researchers must ensure they do not distort data to
make it fit into the new study but uphold the voices of participants as closely
as possible to their original contexts. In this study, we did not use a data set
from another research project, but rather gathered responses written by the
participants—in response to questions also generated by participants—we
minimized this ethical issue. As with other types of qualitative research using
primary data, we attempted to stay true to the intended meaning of what
participants wrote. Other limitations of using secondary analysis are dis-
cussed in the limitations section of the article.

Data analysis strategy

Analysis of the secondary data consisted of five steps, according to qualitative
content analysis procedures. This helped set the stage for approaching the data
with a beginner’s mind. In step 1, we collected 40, single-spaced pages of original
blog postings (n = 28) and relevant comments (n = 46), then the first two authors
read through the collection to get a sense of the type and nature of the whole. We
discussed personal experiences and documented them to better identify poten-
tial biases and previous meanings related to the research questions (Larkin et al.,
2006). In step 2, the researchers re-read the blog posts, engaging in open coding,
to identify the most common and analytically rich themes from which to base a
more selective coding scheme (Charmaz, 2014). Open coding was inductive, and
we formed a codebook of major categories and themes with descriptions of each.
In step 3, we compared codes, and where discrepancies existed, we described
our coding process and decided collectively on codes that best represented and
explained the data (Charmaz, 2014). Examples of preliminary codes in step 3
included: Family relationships, Siblings’ responses to stress, and ASD’s impact
on sibling’s life trajectory. In step 4, the first and second authors engaged in
focused coding according to the previously established coding scheme. The
researchers coded the comments separately and met to preserve congruence in
188 R. A. DANSBY ET AL.

coding definitions and check the trustworthiness of the process (Creswell, 2013).
In step 5, the first and second authors reviewed codes conjointly and discussed
impressions of the themes of the siblings’ experiences being raised with a child
with autism, and refined emergent categories. Based on these, the content of the
blogs was fit into four themes and eight sub-themes.

Results
From the 29 original blog posts and 31 comments, we extracted 161 sig-
nificant statements. Arranging the statements into clusters resulted in four
themes of NT siblings’ experiences being raised with a child with autism: (1)
Atypical family relationships; (2) Complex spectrum of emotional experi-
ences; (3) Autism influencing NT siblings’ life trajectories; and (4) A spec-
trum of coping strategies. Figure 1 visually presents these major themes along
with their sub-themes. Quotes and definitions of each are shared in the
following section.

Theme I: Unique family relationships

Siblings of children with autism describe atypical family circumstances that
could be grouped into two sub-themes: (1) Overall relationships with sibling
(s) with autism; and (2) Communication and relationships with parents.

Relationship with sibling with autism

Many discussed their relationship with their sibling in comparison to friends
with typically developing siblings, often mentioning aspects they enjoyed.
Each reflection carried emotional content, spanning from dislike to love. One
22-year-old female framed the behavior of her brother with autism positively,

THEMES III.
THEME I. THEME II. THEME IV.
Autism Influencing
Unique Family Complex Spectrum of Spectrum of Coping
Relationships Emotional Experiences NT Siblings' Life Strategies
Trajectories

I. Relationship with I. Negative I. Personal Life* I. Adaptive Coping*

Sibling with Autism Emotions* •Identity Formation •Networking with other
•Humourous •Frustration/Anger •"Separateness vs. siblings
•"Life's not fair" •Worry, Fear, & Togetherness" •Professional Therapy
•Importance of Embarrassment •Personal Relationships •Managing stress via
boundaries •Guilt •Caregiving exercise
•Isolation
•Sadness

II. Communicaion & II. Professional Life Maladaptive Coping

Relationships with II. Positive Emotions •Occupation •Substance use
Parents •College •Blaming God, parents,
•Pride
•Broken •Full-Time Caregiving doctors, etc. for the
communication •Admiration autism
•Negative Experiences •Love
with parents
•Parentified

Figure 1. Major themes and subthemes. Note: *Major sub-theme.

 JOURNAL OF FAMILY PSYCHOTHERAPY 189

saying, “I have come to really enjoy his little quirks and inventive ideas.” An
older sibling of a sister with ASD expressed difficulties: “Life is not fair and
(is) hard, because I grew up not being able to interact with my younger sister
in comparison to many peers who grew up with normal siblings who are not
disabled.” Others discussed tactics that were helpful in bonding, including,
“respecting boundaries,” playing video games together, and “(going) out just
the two of us.” While some of these experiences may be common between
siblings where there is no autism, many described characteristics unique to
the autism spectrum.

Communication and relationships with parents

Participants also described their relationships with their parents in unique ways
with unique features. Unfortunately, almost all posts related to this theme were
negative. Many felt unable to communicate with their parents, not feeling close
to them, and feeling unseen. In one account, a NT sibling felt neglected: “I feel
forgotten and unloved. (My parents) are so busy paying attention to him and
trying to get him under control that they forget about me. . .I am alone” (female,
age 17). One blogger empathized by responding, “I also got the half-assed end of
the parenting.” The 17-year-old’s blog title was, “My little brother is special
needs. My parents give him all their time and energy and have forgotten about
me.” At the same time, many siblings felt an expectation to help with their
sibling’s caregiving in the present and to take full caregiver responsibility in the
future, which for some led to feelings of being burdened.

Theme II: Complex spectrum of emotional experiences

Positive emotions
Though discussed sparsely in this sample, the most apparent positive emo-
tions of NT siblings were pride, admiration, and love for their siblings with
autism. One older sibling wrote, “I think my (younger) brother’s pretty damn
cool—autistic or not.” Additionally, having clearly thought about life with
only NT siblings, the same blogger wrote, “If I could choose between an NT
sibling and my brother—I’d still go with my brother.” Others stated their
positive sentiments simply. For example, one 20-year-old sibling declared, “I
will always be proud of him and love him.”

Negative emotions
The feeling of being alone and isolated from others often came up across both
original posts and comments. One, a younger sister to the sibling with ASD, said,
“I don’t really have anyone to talk to about it, and I feel really alone sometimes.”
Another younger sibling echoed these sentiments: “I remember how lost we all
felt, as a family, trying to cope (without early intervention). It is an area that
needs attention.” This sense of isolation seems connected to these bloggers’
190 R. A. DANSBY ET AL.

publicly opening up about very personal experiences. Several expressed wanting

to know if there were others with similar experiences: “I just want to talk and just
see if there is ANYONE like me out in this world” (Older sibling, age 22). Many
described a relief in finding out they were not alone.
Worry, fear, embarrassment, and sadness were also common, with some
worrying about their families, themselves, and the burdens they carry as an NT
sibling. A typical example was shared by one, who said, “I too worry about how
difficult it is on my parents and the responsibilities that have been placed on me.”
Others expressed concern over their siblings’ futures: “I worry about the resources
available (at college) for her to be able to grow and meet new people, and to meet
similar people to her.” Another viscerally described fear, saying, “I cried myself to
sleep sometimes and didn’t know who to speak to about it.” One 20-year-old
sibling described the awkwardness of his/her 18-year-old brother’s autistic beha-
vior in public: “His comments are downright cringe-worthy. . .we’ve (family) been
embarrassed by him more times than I can count.” All the writers expressing
sadness did so from the position of feeling sad for their sibling with autism, not
themselves. One (male, age 27) stated, “It truly breaks my heart to have to put him
(twin brother with ASD) in a group home once our mother passes, but it’s really
the only option. . .I feel. . .just overwhelmingly sad about all this.”
Some expressed strong anger or other negative emotions, such as this
sibling who wrote, “Throughout our relationship, my feelings for him has
fluctuated between either hate or indifference.” One writer (male, age 26), in
response to another, wrote:

I know the anger and frustration. I know the screaming and the hitting, the
inability to go anywhere or do anything with both parents, or have friends over,
since the ones who know your brother are too scared to come and the ones who
don’t can’t because they’ll disrupt his routine.

Similar to these feelings was not hatred of the sibling with autism but
rather a hatred of the autism itself, as one older sibling expressed, “I f**ing
hate the autism!”
Finally, guilt was a common negative emotion running through many posts,
sometimes implicitly, as in this statement: “I always feel self-centered for wanting
(support groups/forums for siblings of children with autism)—to the point where
I usually talk myself out of doing real research into it” (age 21). Other times,
statements were more overt: “I always feel really guilty and like I’m a failure as a
sister.” This ran deep for some: “I also spend night sobbing and not being able to
sleep because I have so much guilt for hating my own brother for ruining so many
lives.” Some demonstrated the complex mix of negative emotions, as another said,
“I’ve hated and been jealous of my brother because he gets all of my parents’
attention. . .At the same time, I also feel guilty over it, because I love him so much
and he really needs more care” (older sibling, graduate student).
 JOURNAL OF FAMILY PSYCHOTHERAPY 191

Theme III: Autism influencing NT siblings’ life trajectories

Autism’s relationship with siblings’ personal lives
Autism was related to NT siblings’ personal life trajectories in three basic ways:
(1) caregiving; (2) identity formation; and (3) a “separateness versus together-
ness” dilemma. First, siblings reported having a caregiving role in their families
involving physical and financial care (producing emotional ramifications),
protection and advocacy for their siblings, and teaching life skills. Regarding
physical care, one sibling described assisting his step-mother: “She has a hard
time taking care of my brother, so that’s where I come in” (male, age 27).
Another older sibling described not wanting this responsibility of providing
care for their sibling: “It’s a chore taking her anywhere.” Some discussed having
to and/or wanting to provide financial support for their sibling after their
parents’ passing. What stood out about physical/financial caregiving was the
emotional experience. While empathizing with a blogger’s original post,
another sibling stated, “I, too, worry about how difficult it is on my parents
and the responsibilities that have been placed on me.”
Many NT siblings talked about their desire to impart skills. One described,
“I’d like to be able to teach my brother to become more sociable and hold
more developed conversations with people he meets” (age 21). Others talked
about preparing for the future: “I want to help him become more indepen-
dent and responsible for himself now while we are both young.” Many also
discussed their caregiving roles as protecting; for example:

As a sibling, we really are often the first line of defense when it comes to stares,
pointing, unkind words. . .It is so important to not only advocate for your autistic
sibling, but (also) to (inform) people who don’t know better. (age 27)

Siblings also took the role of advocating for the needs of families, includ-
ing other siblings. As one said:

There is not enough support and training for parents and siblings. My (older)
sister wasn’t lucky enough to have early intervention and I remember how lost we
all felt. . .It is an area that needs attention. (younger sibling)

An older NT sibling summed up this influence when he/she said, “It forces
a sibling to grow up as soon as possible.”
The second way ASD was associated with NT siblings’ personal life trajec-
tories was through identity formation. One sibling wrote, “I feel like my life
started revolving around my brother when he was diagnosed when I was five. . .I
felt like I hadn’t been able to establish a sense of identity for myself” (age 22).
Also, many mentioned how their sibling’s autism had impacted their social
identities via their relationships with friends and significant others:
192 R. A. DANSBY ET AL.

I haven’t really been able to spend time with other people my age, because my
parents don’t want me to leave them with my brothers. . .I feel like I will just drift
away from my friends, because I am not able to keep in contact with them.

In cases where siblings could have personal relationships with people

outside the family, they described complicated experiences, such as, “It was
scary introducing my significant other to my family, especially my sister
(with ASD).” Finally, being raised with a child with autism seemed to
influence siblings’ formation of an identity as a future parent: “It makes me
not want children on the chance that they may get autism.” Another said,
“He is the reason I will never have my own children, as I can’t imagine
ending up with a child with autism. I’m not strong enough to do it again.”
According to the siblings in our sample, autism also seemed to be asso-
ciated with a “separateness versus togetherness” dilemma for siblings’ perso-
nal lives. For example, several NT siblings wrote about the struggle of
wanting to separate and move away to further develop their personal iden-
tities and careers, but also experiencing negative feelings about leaving the
family:
I want to leave here and go far across the country for college, but feel so awful for
doing that because it’s not (sibling’s name) fault and it’s not my parents fault that
he was born like this. I feel like I am abandoning my family and my parents, like I
will be leaving them all alone. (female, age 17)

In response to this post, another participant empathized with this struggle

and gave advice in return, saying, “I felt a great weight lifted off my shoulders
when I went away to school.”
The final way ASD was associated with siblings’ personal lives was siblings’
future caregiving choices. One male sibling recalled a conversation between
him and his parents at age 13: “(My parents) were going to give me power of
attorney over my siblings in case something ever happened to my parents. I
accepted that responsibility, but it was my choice to make.” Others discussed
being unwilling to be a future caregiver for their sibling: “I care immensely
for him but am unwilling to sacrifice my independence to provide constant
care” (female, age 24). Finally, siblings discussed their inability to care for
their siblings and how the severity of their siblings’ tantrums and other
behaviors weighed in on their decision, as this male sibling wrote:
I will not be able to take care of my brother when (our mother) passes, as trying to
get my life together and have children with him around wouldn’t be the smartest
idea. He’s very much prone to episodes of rage. (male, age 27)

Relationship with siblings’ professional lives

Choices regarding career or occupation, including their future caregiver
statuses, were related to their siblings’ diagnoses. Several bloggers discussed
their diagnosed siblings’ relationship to their decisions to work with
 JOURNAL OF FAMILY PSYCHOTHERAPY 193

individuals with special needs. For example, one sibling said, “One thing. . .I
do now that I probably wouldn’t do if my brother didn’t (have autism) is be a
behavior analyst” (age 26), and another commented, “(Being raised with a
sibling with autism) led to me doing volunteer work with autistic children.”
(male, age 26)

Theme IV: A spectrum of coping strategies

Many bloggers discussed and gave suggestions for various activities that have
helped them manage the variety of emotions and experiences that occurred
during their development.

Adaptive coping
Many wrote posts and asked questions in hopes of discovering they were not
alone. One writer asked, “I want to know I’m not alone in my experiences. Anyone
out there with similar stories?” Others responded by offering to talk in the future
via private message. Additionally, several siblings discussed the positive effects for
them and their negative feelings of seeking professional counseling/therapy: “It
was scary for me at first, but going to counseling has been one of the best decisions
I’ve made. It’s helped tons with coping.” Finally, one writer talked about main-
taining a routine incorporating time at the gym as a way to relieve the stress.

Maladaptive coping
Unfortunately, other siblings have used maladaptive coping strategies, such
as the use of substances like drugs and alcohol. Other maladaptive
approaches to coping included “blaming God, my parents, the doctors,
everyone for allowing him to be born and to live this long.” (female, age 17).

Discussion
Diversity of experience
There is a saying in the autism community, from Dr. Stephen Shore (a person
with autism) emphasizing the diversity of the autism spectrum: “Once you’ve
met one person with autism, you’ve met one person with autism.” In this study,
siblings being raised with a child diagnosed with ASD described diverse experi-
ences, which were grouped into four major themes: (1) Unique family relation-
ships; (2) Complex spectrum of emotional experiences; (3) Autism influencing
NT siblings’ life trajectories; and (4) A spectrum of coping strategies. Our
themes are similar to previous findings by Petalas et al. (2012), who conducted
phenomenological interviews to understand the perceptions and experiences of
siblings with a brother with ASD. Their themes included: (1) the impact of
autism on themselves and their family; (2) how they were impacted by other’s
194 R. A. DANSBY ET AL.

responses to a sibling with autism; (3) their histories with the sibling that
contextualized their experience; (4) levels of acceptance and tolerance with a
sibling with autism; (5) the positive experiences with their sibling; and (6) their
worries about the future. The findings of this study differ from Petalas and
colleagues (2012) in that our participants discussed both brothers and sisters and
did not as prominently describe being negatively impacted by others’ reactions
to their sibling with ASD as did Petalas et al.’s (2012) participants.

Autism and family relationships

As previous literature shows, an ASD diagnosis involves the entire family (e.g.,
Lin, 2011; Ramisch et al., 2014), and our results support this conclusion. Our
participants described a variety of relationship experiences from having fun
and feeling loyal to being in a nightmare. Further, most siblings had negative
experiences with their parents and felt forgotten, unloved, and cheated out of
time with them due to the amount of energy given to the diagnosed child. In
contrast to the research of McHale, Simeonsson, and Sloan (1984), the siblings
in our sample expressed only negative experiences with family communication.
This suggests there may be a lingering discrepancy between research findings
on siblings’ needs and interventions that effectively address them. It also may
be that those posting were more likely to be seeking support for these kinds of
stressors than were other NT siblings who had more positive experiences.
While the efficacy of the strategies described by the siblings in our sample
cannot be verified by this study, it is notable that multiple siblings reached out
as a form of coping and made comments on feeling like they could not talk to
anyone they knew. This finding is discussed further in our implications for
clinicians and for future research.

Association with siblings’ emotions

Growing up with a sibling with autism was also associated with NT siblings’
emotional experiences, which is also consistent with previous literature (e.g.,
Beyer, 2009; Tudor, 2015). For example, when focusing on siblings’ diag-
noses, Beyer (2009) found a variety of positive and negative emotions.
Likewise, Angell et al. (2012) revealed a variety of negative emotions experi-
enced by siblings such as feelings of isolation, guilt, embarrassment, worry,
sadness, and frustration/anger/hatred toward their sibling and the autism. In
our study, some siblings experienced depression in early childhood and
young adulthood. Others expressed only love and admiration for their sib-
lings. Many articulated both positive and negative feelings about their sibling,
a finding recently discussed by Corsano et al. (2016), where NT siblings
experienced mixed feelings toward a brother with autism.
 JOURNAL OF FAMILY PSYCHOTHERAPY 195

Altered family roles

Similar to Bagenholm and Gillberg (1991), our study found NT siblings’
experiences alter the roles they may take on for their sibling, becoming
providers, teachers, protectors, and advocates. There was also an expressed
influence on siblings’ identity formation, a type of existential process many
siblings went through as they tried to make sense of their own life’s purpose.
Mirrored in the research of Bagenholm and Gillberg (1991), the diagnosis
also altered NT siblings’ occupational and personal life choices, relationships
with friends, and decisions to be a future caregiver. Our study provides in-
depth descriptions of how these choices and options might be processed by a
professional. For example, a counseling session might focus specifically on
current and future family roles after an autism diagnosis.

Siblings’ abilities to cope with stress

One of the unique themes in this study was the various ways NT siblings cope
with their challenges. Several siblings asked questions and reached out for
support to others who may be experiencing the same events. The act of reaching
out through private conversations for one-on-one support was one of these
coping strategies. Others wrote about entering therapy, which others have also
found useful in dealing with similar circumstances (Angell et al., 2012).

Commonalities of experience
Although the siblings in our study posted a variety of experiences, there were
many similar themes across their stories, which is important to provide when
using components of a phenomenological lens (Smith et al., 2009). A sum-
mary of their experience would start with the challenging emotions experi-
enced by these siblings in childhood and early adolescence. These included a
variety of indifference, resentment, as well as deep care, affection, and loyalty
toward the diagnosed sibling. Some felt bound by duty and obligation, some
felt cheated out of a “normal” life, and others experienced empathy, love,
enjoyment, and a close family bond they would not trade. As families
progressed through the life cycle (i.e., from families with young children to
launching young adults), many siblings demonstrated evidence of emotional
maturation with a corresponding shift in emotional experience. While no
two experiences were exactly the same, most had thematic commonalities,
and responses in the data where people commented on other’s posts suggest
many of these siblings could relate to each other. Alongside the common
emotional thread running through NT siblings’ experiences, there was a
general sense that it was quite difficult growing up in a family with a child
with autism. Finally, due to the demands on parents to meet the needs of
196 R. A. DANSBY ET AL.

their child with ASD, the NT siblings commonly lacked a voice within their
family dynamics while also lacking resources in the outside world.

Clinical implications
Family therapy and sibling advocacy
This study illuminates an area of family process that is little understood by
some mental health professionals. Hearing siblings’ voices can help clinicians
without much experience with autism to better grasp the experiences of NT
siblings when working with a family of a child diagnosed with ASD, as well
as understand the systemic context of the larger family. Since no sibling is an
island, mental health professionals would do well to attend to all members,
not just the parents and the diagnosed child. Another related implication
from these siblings’ voices involves advocacy with siblings’ families. Parents
and NT siblings often advocate for their sibling with autism, but this research
provides a forum for these siblings who may often go unheard. NT siblings
can grow up feeling unseen, misunderstood, unloved, and unparented, and
mental health professionals have a responsibility to be an advocate for their
voices and help them become seen, heard, understood, loved, and wanted. To
do this, we suggest therapists include the NT sibling in conversations and
therapy sessions regarding the family with a diagnosed child. Specifically,
therapists can ask the NT sibling about their mental health status, how the
presenting problem is impacting them, and about their coping tactics. Mental
health professionals can also encourage parents to spend one-on-one time
with the NT sibling and present space for the child to disclose their feelings
without judgment or punishment, a strategy also suggested by Harris (2007).

Educate oneself about siblings’ experiences

Additionally, several siblings emphasized how good it felt to finally talk with
others who understood what it was like having a sibling with autism. As such, this
is a valuable consideration for mental health professionals. It is important for
clinicians working with an NT sibling to educate themselves on some common
experiences so they can provide listening ear from a posture of understanding.

Go beyond just addressing emotional experiences

While getting a sense of what an individual or family may be feeling
emotionally is important, therapy must go beyond simply recognizing and
validating siblings’ emotional experiences. The literature now has well-docu-
mented evidence of the likely positive and negative emotions siblings experi-
ence, giving clinicians a solid foundation to begin working with siblings and
their families. However, an important next step is for clinicians to address
siblings’ abilities to cope with their emotions and experiences in therapy.
From our results, siblings appear to be reaching out for and desiring better
 JOURNAL OF FAMILY PSYCHOTHERAPY 197

coping skills, and mental health practitioners are already equipped and
naturally positioned to teach clients about healthy coping strategies.

Limitations and implications for future research

Data limitations
One of the limitations of a secondary content analysis mixed with a phenom-
enological lens is that the findings will be bound by what the participants
chose to share. Although this is always the case with research, in qualitative
analysis it is of particular importance, because the experiences of the sample
will provide the material to work with and analyze. In this case, the sample
was self-selected, and likely consisted of participants who had more intense
experiences around this issue than those who did not post or who did not
need social support. Blog data is not amenable to gathering a representative
sample in this regard. Related to this, secondary data does not allow the
researchers direct access to participants to conduct member checks and verify
writers’ intended meanings in their posts. We attempted to read through
each post to gather the context around the participant’s individual experi-
ence, but future research could employ semi-structured interviews to be able
to ask clarifying questions.

Sample limitations
Another limitation was the lack of demographic information provided. The
site, Reddit.com, only posts a username for each “text link” written, so unless
the blogger clarified their age, geographic location, gender, or socioeconomic
status, we did not have access to the information about all bloggers. It is
possible that with a different sample or with a better understanding of the
demographic characteristics of these bloggers, the research would be stronger.

Future research on communication in the family

The lack of positive results related to family communication is a striking result.
Very little literature on this was found prior to our study, and thus we consider the
information our sample provided in their self-disclosures to be novel and worthy
of further consideration. Many described poor communication within their
families, specifically between their parents and themselves. Sometimes, the
theme of communication centered around lack of discussion of the ASD diag-
nosis, and sometimes it dealt with unclear expectations placed on these partici-
pants by their parents. This is an area in which mental health clinicians are
uniquely suited to intervene. Clinicians can track patterns of communication
within a family and help family members increase their understanding of what
certain topics or issues mean to other members. Further, due to the emotional
nature of our sample’s posts, it would be worthwhile to consider using interven-
tions that target the emotional components of family communication (e.g.,
198 R. A. DANSBY ET AL.

content versus process, meta-communication, or meaning-making). As suggested

by some of these siblings, therapy may be a particularly helpful option in this
regard.

Future research using alternative approaches and methods

Although qualitative research provides a more in-depth look at an area of interest,
a quantitative approach could help the field identify if similar experiences can be
generalized to other NT siblings. In future studies, for example, researchers could
ask questions like: (1) What do NT siblings do to strengthen their relationships
with their brother or sister with autism? (2) How do NT siblings, at various life
stages, define their roles in their families, especially regarding caregiver respon-
sibilities? (3) What are specific behaviors of mothers and fathers that assist in the
bonding of children with ASD and the NT sibling(s)?
Overall, this study is a reminder that all members of a family experience an
autism diagnosis, and mental health professionals of all types are well-posi-
tioned to help them in their unique journey.

ORCID
Rachael A. Dansby http://orcid.org/0000-0001-7391-8195
Brie Turns http://orcid.org/0000-0001-9685-5799
Jason B. Whiting http://orcid.org/0000-0001-9471-0027

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