Journal of Autism and Developmental Disorders

https://doi.org/10.1007/s10803-018-3784-6

ORIGINAL PAPER

Personal Growth Experiences of Parents to Children with Autism

Spectrum Disorder
Einat Waizbard‑Bartov1,2 · Maya Yehonatan‑Schori1 · Ofer Golan1 

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Abstract
Experiences of parenting a child with Autism Spectrum Disorder (ASD) have mostly been studied in relation to hardship.
The current study explored personal growth experiences of Israeli parents to children with ASD, specifically in relation to
Tedeschi and Calhoun’s crisis-related growth model. Nineteen parents were interviewed, and qualitative categorical content
analysis was performed. Four major growth themes emerged: Empowerment and personal strength, Existential perspective/
spiritual-emotional experience, Interpersonal and Expertise, professional or political involvement. Themes were largely
consistent with the crisis-related growth model, with some being unique to the current subject of inquiry. Findings indicated
growth might occur differently in different cultures. Clinically, with some parents, the focus regarding the parenting of their
child with ASD should be shifted from adjustment to growth.

Keywords  Parenting · Crisis related growth · Autism spectrum disorder · Qualitative research · Cultural differences

Introduction as a whole. The current study aimed to qualitatively explore

Parenting is considered one of the most meaningful and
complex human experiences (Stern et al. 1998). This expe-
rience may be significantly altered when parenting a child
with Autism Spectrum Disorder (ASD) (Eisenhower et al.
2005; Blacher and McIntyre 2006). So far, research on par-
enting children with ASD has focused mostly on difficulties
associated with this parenting experience (Dabrowska and
Pisula 2010; Smith et al. 2010; Ludlow et al. 2012; Kheir
et al. 2012; Casey et al. 2012). However, only a small num-
ber of studies have addressed the possibility that parenting
a child with ASD may result in personal growth (Phelps
et al. 2009; Benson 2010, 2014; Zhang et al. 2015; Ooi
et al. 2016), highlighting the need for more research aimed
at understanding the inherent positive processes caregivers
undergo in this type of parenting. Furthermore, this under-
standing could potentially assist in the creation of suitable
support systems for parents as individuals and for families
* Ofer Golan
ofer.golan@biu.ac.il
1
Department of Psychology, Bar-Ilan University,
5290002 Ramat‑Gan, Israel
2
Present Address: Department of Psychology and The Mind
Institute, University of California, Davis, Davis, CA, USA
parents’ personal growth experiences in this context accord-
ing to Tedeschi and Calhoun’s (2004) crisis-related growth
model.
Parenting of children who develop atypically is character-
ized by unique demands, requiring considerable investment
of time, emotional and physical resources (Hughes 1999;
Daire et al. 2011; Ooi et al. 2016). Parenting a child with
ASD may be even more complex, due to the condition’s
characteristic socio-emotional communication deficits and
restricted and repetitive behaviors, which persist throughout
development (Frith 2003; American Psychiatric Association
2013; Lopez 2015). This type of parenting has also been
found to influence the family in other ways, such as a reduc-
tion in family activities and overall time spent together (Ooi
et al. 2016).
Receiving an ASD diagnosis for one’s child is a continu-
ous, complex process, spanning all the way from suspicion
of developmental differences to the eventual provision of
information regarding the child’s prognosis. This process
may be described as devastating and traumatic in parents’
narratives. Furthermore, the process too often involves long
wait times before the diagnosis is obtained, which have
been correlated with parents’ poor emotional well-being.
During this process, parents may experience a strong initial
emotional response, anxieties which arise about the future,

13
Vol.:(0123456789)

anger in response to insensitive delivery of the diagnosis,
and unsatisfactory support following it (Solomon and Chung
2012; Crane et al. 2016; Tait et al. 2016; Hannon and Han-
non 2017; Potter 2017). However, in other cases, receiving
the diagnosis itself may bring relief after a long, exhaust-
ing search period (Seligman and Darling 1989; Gray 1994;
Potter 2017). Early years are usually experienced as very
stressful for parents (Gray 2002; Jones et al. 2018), while
in following years, coming to terms with the diagnosis can
lead, in more optimal cases, to adjustment, acceptance and
resolution (Seligman and Darling 1989; Joosten and Safe
2014; Ooi et al. 2016). Resolution usually occurs when par-
ents’ internal representations of the child and of themselves
as parents, which existed prior to receipt of the diagnosis,
are worked through and integrated with post-diagnostic rep-
resentations of themselves and of their child. These new
representations are thus congruent with the new reality of
having a child with special needs rather than the hoped-for
typically-developing child (Bowlby 1980). Mothers who
were classified as resolved with the diagnosis (based on the
“Reaction to Diagnosis Interview”) were more likely to have
securely attached children, compared to mothers classified as
unresolved, emphasizing the importance of parental resolu-
tion for children’s developmental outcomes (Barnett et al.
2004; Marvin and Pianta 1996; Huang and Zhou 2016).
Although parents of children with ASD may react in dif-
ferential ways to their unique life conditions (Seligman and
Darling 1989; Brobst et al. 2009; Myers et al. 2009), most
studies had documented negative influences and difficulties.
Parents have reported high levels of stress, anxiety, depres-
sion, and health-related problems and lower quality of life
(Lee 2009; Dabrowska and Pisula 2010; Smith et al. 2010;
Ludlow et al. 2012; Kheir et al. 2012; Casey et al. 2012;
Huang and Zhou 2016; Jones et al. 2018). These might, in
turn, also influence parenting styles through mechanisms
such as parental discipline strategies (Shawler and Sullivan
2017). Mothers of children with ASD report more stress and
depression and less efficacy in their relations with their child
with ASD compared to the relationship with that child’s typ-
ically developing siblings (Meirsschaut et al. 2010). They
also report more stress than mothers of children with other
developmental difficulties (Gray 1994; Eisenhower et al.
2005; Estes et al. 2009). Caring for a child with ASD can
continue well into adulthood (Howlin 2004), with a constant
need to familiarize oneself with and learn how to utilize
health and educational systems, and an ongoing adjust-
ment process with ups and downs along the years (Ooi et al.
2016). A longitudinal study of parents of children with ASD
and a co-morbid intellectual impairment showed that two-
thirds of parents reported some decrease in stress symptoms,
but also that stress, anxiety and depression were still expe-
rienced by half of the parents ten years later (Gray 2002).
Nonetheless, studies have also revealed parental resilience
13
Journal of Autism and Developmental Disorders
and adaptation manifesting in parental reports of successful
coping (with the help of social support systems and adap-
tive strategies) despite the unique difficulties that parents of
children with ASD face (Gray 2001, 2003; Tarakeshwar and
Pargament 2001; Tunali and Power 2002). Increased use of
disengagement and distraction as coping strategies in moth-
ers of children with ASD was related to increased maternal
maladjustment, while increased use of cognitive reframing
and mindfulness were linked to improved parental outcomes
(Benson 2014; Jones et al. 2018).
Some argue that the experience of parenting a child with
ASD can have traumatic elements (Gray 1998; Gombosi
1998; Klauber 1999; Casey et  al. 2012). Post-traumatic
syndrome refers to stressful events that entail a significant
threat to one’s life or one’s children’s lives. Gombosi (1998),
a psychoanalyst as well as a father to a child with autism,
claims this sort of parenting is a long-lasting trauma, for
which acknowledgement is needed in order to reconstruct
and reorganize parents’ schematic worlds. Furthermore,
Casey et al. (2012) report post-traumatic stress symptoms
in parents of children with ASD, including intrusive recol-
lections, avoidant symptoms and hyper-arousal. Hence, it
seems the psychological patterns identified in families of
children with ASD are not only a result of coping with the
child’s condition, but also a reaction to trauma.
In light of this evidence, it is possible to examine post-
traumatic growth or stress-related growth in parents’ expe-
riences. These processes are defined as the experience of
positive change as a result of coping with extremely dif-
ficult circumstances (Park et al. 1996; Tedeschi and Cal-
houn 2004) that substantially burden the individual’s cop-
ing resources and represent a meaningful challenge to their
understanding of the world and their place in it. Growth
literature assumes that psychological processes involved
in managing this disturbance to daily life contain elements
which can lead to a positive change (Tedeschi and Calhoun
2004). However, not every crisis results in growth, and stress
often leads to a decline in one’s well-being (Aldwin and Lev-
enson 2004). The concept of crisis-related growth suggests
that the result of the cognitive-emotional working through,
needed for crisis resolution, is a subjective experience which
supports growth and promotes one’s personal development.
This growth is manifested by more than mere resilience and
has a transformational quality.
A central crisis-related growth model underlies Tedeschi
& Calhoun’s Post Traumatic Growth Inventory (PTGI, Tede-
schi and Calhoun 1996). According to the PTGI, coping with
a crisis could be conceptualized as beneficial if it involves
positive reinterpretation or reconstrual of events. Individual
differences, support and disclosure, and cognitive processing
structures challenged by the event are elements that play a
significant role in post-traumatic growth. These elements
interact with the development of a one’s life narative in an
Journal of Autism and Developmental Disorders
ongoing, dynamic fashion (Tedeschi and Calhoun 2004).
The model includes five major factors that play a part in the
process of growth after crisis: (i) An increased apprecia-
tion of life and a change in the sense of what is important.
(ii) More meaningful and intimate relatioships with others.
(iii) A sense of increased personal strength or recognition
of one’s powers. (iv) Discovery of new possibilities or a
change in the route taken in life. (v) Spiritual-existential
development. Although there is wide acceptance of these
five growth dimensions in post-traumatic growth literature,
there are also claims of other possible growth dimensions
that the PTGI failed to capture, depending on various fac-
tors, such as the traumatic circumstances, cultural factors,
and even the wording of questions in the instrument (Park
and Lechner 2006). Hence, the use of a qualitative method-
ology that gives room to the full range of experience may be
especially suitable for explorations of crisis-related growth.
The nature of the individual’s narrative may play an
important part in the ability to experience growth following
traumatic circumstances. Several actions have been associ-
ated with growth, such as searching for crisis related ben-
efits and establishing a future orientation with new priori-
ties (Meichenbaum 2006). The association between the level
of subjective difficulty one experiences and between one’s
sense of personal growth has been described as curvilinear
(Tedeschi and Calhoun 1995; Powell et al. 2003).
In recent years, a growing number of works have explored
parents’ experiences from a narrative- qualitative angle
(Midence and O’Neill 1999; Huws et al. 2001; Gray 2001,
2002, 2003; Bayat 2007; Myers et al. 2009; King et al. 2009;
Huang and Zhou 2016; Ooi et al. 2016; Tait et al. 2016; Han-
non and Hannon 2017; Potter 2017). By doing so, a few have
stumbled upon the possibility that parenting a child with
ASD can be associated with positive outcomes. Fleischmann
(2005) saw a sense of empowerment in comments of parents
of children with ASD on internet blogs. Tarakeshwar and
Pargament (2001) found a correlation between the use of
positive religious strategies (such as searching for support
from a priest) and a global measure of stress related growth.
Bayat (2007), using quantitative and qualitative methodolo-
gies, found evidence of family resilience in families of chil-
dren with autism, such as family connectedness and close-
ness and positive construal of the disability. According to
King et al. (2009), families to children with ASD reported
becoming more certain about what matters, adopting per-
spectives of optimism, acceptance, and appreciation, and
striving to change the environment so that it meets their
children’s needs as much as possible. In a recent meta-syn-
thesis, Ooi et al. (2016) reported a recurrent theme in par-
ents’ content analysis: stating that having a child with autism
changed parents’ perspective on life and made them more
appreciative of it. Parents also expressed that they became
more sensitive, understanding and less judgmental towards
people around them and that the sense of achievement of
raising a child with autism had boosted their self-confidence.
Phelps et al. (2009), had eighty caregivers complete the
PTGI (Tedeschi and Calhoun 1996), examining variables
of enrichment and stress in caring for a child with autism.
Results indicated caregivers reported greater levels of stress
than enrichment, but also that parents may experience vary-
ing degrees of enrichment and growth. Zhang et al. (2015)
explored dimensions of post-traumatic growth of mothers
of children with autism in mainland China using a phe-
nomenological approach. They found partial confirmation
for Tedeschi and Calhoun’s Post-traumatic growth model:
three out of the five themes were conveyed by participants in
their research sample (a sense of increased personal strength,
more meaningful and intimate relationship with others and
an increased appreciation of life), while recognition of new
possibilities was partially found and spiritual-existential
development was not strong and not clearly articulated in
their sample. These differences may reflect different cultural
contexts of religious practices and discourse in mainland
China, compared to Western society, and they highlight the
need to re-examine the model in a Western society.
The present study strove to build on previous explora-
tions of parents’ positive experiences in raising a child with
ASD. Based on the assumptions that parenting a child with
ASD can be associated with traumatic experiences, we
examined Israeli parents’ growth experiences in relation to
Tedeschi and Calhoun’s crisis-related growth model, using a
ground-based phenomenological approach in a sample from
a Western culture. Our research questions were: (1) How
do the growth experiences of parents to children with ASD
fit in Tedeschi and Calhoun’s crisis-related growth model?
(2) What additional themes not covered by the crisis-related
growth model emerge from the experiences of parents? and
(3) How do the themes emerging from the experiences of
parents in a Western culture differ from those of parents
from mainland China?
Methods
Participants
In order to reach as varied a narrative as possible, represent-
ing diverse experiences (Strauss and Corbin 1990; Lieblich
et al. 1998), purposeful sampling, accepted in qualitative
research, was employed in order to recruit information-rich
cases and enable a panoramic view of the phenomena (Palin-
kas et al. 2015). Fourteen mothers and five fathers of Israeli
children, adolescents and young adults with ASD were inter-
viewed. Participation was voluntary, using advertisements
calling parents to join a study on growth experiences and
positive aspects of parenting a child with ASD (published
13

in ASD internet forums). To confirm diagnosis upon recruit-
ment, parents reported the name of the clinician who made
the diagnosis, the clinical center in which the assessment
was carried out, and the educational placement of the child
in ASD-related settings. Parents varied in age from 36 to 67
(m = 49.1, sd = 9.7). Most were self-characterized as middle
to high socio-economic status. Seventeen participants were
married. Two were divorced and raised the child by them-
selves. Participants included two couples, though spouses
were interviewed separately. Age at diagnosis varied signifi-
cantly from 1 to 14 (m = 5.9, sd = 4.9). Sixteen parents had a
boy with ASD and one had a girl. The distribution of diag-
nosis was as follows: four parents of children with autistic
disorder, seven parents of children with Asperger syndrome
and eight parents of children with ASD with varying lev-
els of required support (American Psychiatric Association
2013). As new stages in their child’s life present parents with
different challenges, we attempted to reach parents with chil-
dren in varied ages. Hence, children’s ages ranged between
9 and 26 years (m = 15.8, sd = 4.9) and time since diagnosis
varied between 4 and 17 years (m = 9.5, sd = 3.5).
Tools and Procedure
A semi-structured interview protocol (Appendix A) was
designed to help parents reflect upon their parental experi-
ence. The questions were based on Tedeschi and Calhoun’s
crisis-related growth model. They were designed so that the
first part of the interview contained general, less specific
questions regarding parental experiences which were meant
to allow parents to speak without guidance. The second part
of the interview contained questions which addressed the
themes in a more direct manner, specifically regarding posi-
tive aspects and growth feelings (depending on the inter-
view’s rhythm and nature). The interviewer was a clinical
psychology graduate student. Interviews’ length was unlim-
ited and lasted from one to two and a half hours. Interviews
were recorded and transcribed, then sent to parents, who
were asked to approve the contents and offered a chance
to change or add relevant ideas. A small number of parents
made use of this opportunity and stressed preferred ideas.
Analysis
Categorical content analysis was performed on the tran-
scribed interviews (Lieblich et al. 1998). A phenomenologi-
cal approach that examines the meaning of phenomena from
the informant’s point of view was implemented. Two narra-
tives were not included in the final analysis as their content
dealt mostly with the negative aspects of parenting a child
with ASD, a subject that is well-documented elsewhere and
that was not the focus of this work.
13
Journal of Autism and Developmental Disorders
A ground-based theory analysis (Strauss and Corbin
1990) was conducted on participants’ transcribed narratives,
using the ATLAS.ti qualitative analysis software (Friese
2014). The second author read all the transcribed interviews
and created a draft version of the analysis coding scheme.
Next, agreement on codes and text allocation into the dif-
ferent codes was achieved between the second and third
authors. In cases of disagreement between the two, a third
judge specializing in qualitative research was consulted. The
themes that emerged were then compared to Tedeschi and
Calhoun’s crisis-related growth model and similarities and
differences were noted.
Results
“I think we are like a seedling… and it grows and withstands
storms, rains and heat-waves… today I can see the joy and
enriching experiences that this seedling went through while
growing, despite the hardships…”. This image, given by a
mother when asked to describe her parenting experience,
reflects the possibility that parenting a child with ASD can
be viewed as containing elements of growth. Indeed, per-
sonal growth reports were quite common in this study (12
participants, as a result of the purposeful sampling) and a
distinction between two groups was found amongst these
parents. Most parents who reported personal growth (10/12)
had experienced it as a central and defining experience in
their parenting. Several others had also experienced sig-
nificant growth, but this was secondary to negative, pain-
ful aspects of their parenting experience. Five parents did
not report personal growth experiences, but nevertheless
described positive aspects of parenting and expressed a
notion of gaining from their experiences in a way that fitted
the themes described by parents who reported growth.
Growth Themes
Four growth themes emerged from parents’ narratives:
Empowerment and Personal Strength
A significant number of parents described feelings of
empowerment and greater personal strength as a conse-
quence of their parenting experience (a personal growth
process or a recognizable change in themselves). Indeed,
‘strengthening’ was a frequently-expressed concept, since
all parents discussed the complex and sometimes crisis-like
nature of their parenting. As one mother put it: “It was a
very challenging parenting [experience] and it made me
stronger, much stronger”. In some narratives the empower-
ing experience was described as strength gained throughout
difficult situations, while others emphasized the discovery
Journal of Autism and Developmental Disorders
and realization of hidden inner power. One way or another,
parents described their current self as more powerful and
capable than before. These feelings of empowerment,
described by parents, go beyond the domain of parenting and
reflect benefits, gained through parents’ strengthened self-
concept, in other life areas. In addition, almost all parents
described participating in activities to support other parents
to children with ASD, providing advice in support forums
and helping other parents navigating the diagnostic journey.
For these parents, feelings of strength manifest themselves
in the ability to provide help and support to parents who
feel ‘weaker’.
Existential Perspective or a Spiritual‑Emotional Experience
One of the most substantial changes parents reported was the
way they conceptualize and perceive their values, ethics and
spiritual-emotional experience. Parents described growth as
a path that combined cognitive and emotional experiences,
creating existential insights. This theme consists of four
main ideas: (i) perspective and insight—A holistic, evolving,
experience, involving better understanding of oneself, self-
definition and self-acceptance. As one mother described:
“I see myself today as a complete circle. Not that I wasn’t
whole before, but I was different… I was an ellipse… He [her
son] defined me… taught me… what is important in life”.
Parenting becomes a growth-promoting experience thanks
to existential insights or beliefs developed as a way to under-
stand and cope with the parental role. Parents described new
perspectives on life and living; new perspectives on every-
day life experiences, and new meaning making processes.
(ii) Spiritual experience—Several parents described growth
in spiritual terms or as a result of exposure to the develop-
ing field of ‘secular’ (or ‘new-age’) spirituality, which goes
hand in hand with parents’ need for help in order to cope
with parenting difficulties. This spiritual growth results in
a variety of techniques and methods that can become an
integral, and even organizing element in parents’ thinking.
In addition, several religious parents mentioned their grow-
ing belief as a consequence of parenting. For instance, one
mother described: “I think that belief has helped me to better
accept this situation and he [her son] helped me become a
better believer. This is growth for me”. It seems that reli-
gious outlook is connected with special meaning-making
interpretations, thus influencing parents’ experience. (iii)
Emotional experience—Several parents described feelings
of growth as a process that ‘opened’ and ‘connected’ them
to an emotional inner-world. As one mother said: “I grew
up with ‘stop feeling and start thinking’… and after two
years of parenting, an emotional war started with the under-
standing that the child has a really big problem… I think
that’s what cracked the mental block for me”. This “remedial
experience” allows a parent to create a new experience of
their self and of their life. (iv) Encounter with diversity—Six
parents outlined a profound axis of growth in their attitude
towards diversity and in their ability to emotionally contain
the encounter with a ‘different’ child. They described how
this encounter leads to internal emotional processing that
ultimately gives them a new ability to accept and enjoy their
child. This frees parents from the wish that one day they
would “wake up in the morning and he will not have autism
anymore”. As one mother described it: “it’s to overcome
being different and start calling it special, calling it a gift…
that’s the main thing”. Replacing aspirations to normalize
the child with acceptance of the child’s uniqueness helps
parents relate to their child. New attitudes towards diversity
motivate them to think about how the design of the social
system interacts with diverse individuals and, in many cases,
to work in order to promote the value of diversity.
Interpersonal
Changes in interpersonal experiences, in various aspects of
family or social life, were present in many narratives that
included a growth perspective. (i) Couple relations—Most
parents described their relationships with their spouses as
stronger and better, encompassing feelings of unity and
depth resulting from managing the “project” of parenting
a special child. Sharing the work-load creates an intimate
space within which thoughts and emotions are worked
through together. One mother said: “I feel that nobody in
this world can understand like my husband understands.
Nobody can be a partner to such an intense experience
and to understand it, from the inside, like he does. It’s a
shared destiny, a connection”. Another common idea, using
the imagery of the battlefield, was the feeling of winning
a shared victory. (ii) Family system—Several parents men-
tioned that the whole family “got together” or was “united”
while coping with their unique life circumstances. One
father also perceived significant benefits for other chil-
dren in the family. (iii) Parenting other children—Several
parents reported that parenting a child with ASD had an
enriching effect on their parental style in general. Insights
brought about through the complex parenting of a ‘special’
child could manifest themselves through expanded skills
that some parents believe can be helpful for educating other
children in the family. (iv) Friendships, professionals and
extended family—All ‘growing’ parents mentioned the posi-
tive presence of close people in their environment. Some
of these ties are a result of the parenting process (i.e., rela-
tionships with other parents in similar situations that may
replace past friendships). In addition to new ties, including
relationships with exceptional professionals, parents dis-
cussed re-evaluation and acknowledgment of the strength
of existing ties. (v) The child—It seems that the most power-
ful interpersonal encounter for parents is the one with their
13

child. Interviews reflected parents’ positive, loving attitudes
towards their children (whether growth was present or not)
as well as their high level of intimate knowledge of their
children’s worlds in ways that go beyond normative par-
ent–child relationship. This profound intimacy, arising from
the special caring circumstance, is linked with the creation
of a special and powerful bond.
Expertise, Professional or Political Involvement
“I owe my whole career to him” said one of the mothers,
expressing an idea that was repeatedly expressed in the inter-
views. Eight parents described growth in their professional
careers and in their social-political involvement following
this parenthood. Parents frequently reported the acquisition
of expertise in the field of autism that gradually changed
the parent’s professional interest and later enabled a career
change. It is obvious how raising a child with ASD demands
acquisition of extensive knowledge and expertise which can
be transformed into a working tool in parents’ hands. One
mother explained her career change: “it started because of
his need, but I discovered that beyond what he needs—it’s
also what I want” and described how she sees her parenting
as means to discover her therapeutic abilities, which had not
been part of her self-concept before. Career changes expe-
rienced as growth are not limited to autism-related profes-
sions: several parents described how changes driven by their
personal experiences can lead to a variety of new professions
(such as writing, lecturing and communication) or to a feel-
ing that the same job is being done but in a qualitatively
different fashion, thanks to changes in knowledge, expertise
and other domains affected by their parenting.
Another path to growth in this theme is social activism
and political involvement with the aim of promoting the
interests of their families and the autism spectrum com-
munity. A mother involved in a non-profit organization for
parents of children with ASD described: “The cause is so
important to me that it’s pulling me forward. It is the most
important thing I do”. She had never thought of herself as
a political figure and felt that this activity transformed her
character and abilities.
Discussion
The current study actively sought descriptions of the wide
range of growth experiences that can result from parenting
a child with ASD. Based on Tedeschi and Calhoun’s crisis-
related growth model, we demonstrated that parents’ interac-
tion with their child with ASD can have perceived positive
aspects and can lead to personal growth. These findings do
not diminish the negative effects that the hardships parents
undergo can have on their well-being, but rather give voice
13
Journal of Autism and Developmental Disorders
to other experiences and document these perspectives. Find-
ings clearly show that experiences of personal growth are
possible for at least some parents, after a crisis phase and as
a result of an internal journey. In addition, our findings show
this multifaceted experience may be manifested differently
in different cultural contexts. The importance of the current
work lies in its promotion of a wider outlook on parents’
experience, integrating negative and positive aspects.
Emerging Themes
Parents described growth experiences in several routes.
Some see themselves as “better” people today, suggesting
they view their process of change in a positive light. Par-
ents’ views of their parenting as sources of empowerment
and feelings of greater personal strength, documented here,
can be added to previous evidence from adjustment studies.
Fleischmann (2005) who studied blogs of parents of children
with ASD, highlighted a ‘hero’ development narrative in
some. This theme fits the third factor in Tedeschi and Cal-
houn’s (1996) model of post traumatic growth, describing
an outcome of personal strength and acknowledgment of
inner power.
Many growth narratives included a marked change in the
parents’ perspective, accompanied by emotional and cog-
nitive processes leading to insight acquisition. Tunali and
Power (2002) and Benson (2014) have shown how mothers
of children with autism use change of cognitive strategies in
order to cope better. Our results expand this view and show
that a change of perspective can result in growth experiences
through changes in meaning making, attending to the ‘here
and now’ and utilization of the enriched subjective experi-
ence (for example, focusing on the child’s special thinking).
Arguably, because parents’ actual life circumstances are not
likely to change, making problem-oriented approaches less
effective, many parents endeavor to create new perspectives,
which can be experienced as growth. These ideas match
Tedeschi and Calhoun’s factor identifying the growth route
of change in the experience of daily living and views on life,
while spiritual-existential growth, also described by parents
in this theme, matches the ‘Religious transcendence’ fac-
tor from Tedeschi and Calhoun’s model. The connection
between stress-related growth and positive religious strate-
gies was previously described by others (Gray 2001; Tarake-
shwar and Pargament 2001).
More intimate relationships and greater significance
attributed to the interpersonal domain is a theme described
by our participants, that is commonly described in literature
on growth following crisis (Park et al. 1996; Tedeschi and
Calhoun 1996). The most frequently-occurring narrative
here was the description of growth in couples’ relationships.
This finding is supported by reports of couples experiencing
stronger marital bonds following the parenting of a child
Journal of Autism and Developmental Disorders
with ASD (Midence and O’Neill 1999; Zhang et al. 2015).
However, this finding is inconsistent with the literature docu-
menting lower satisfaction, higher conflict levels and higher
divorce rates among parents to children with ASD (Gray
1998; Lee 2009; Brobst et al. 2009). This contrast is well
documented in the meta-synthesis by Ooi et al. (2016), who
argued that parenting a child with ASD can lead to either
result: having a strained or a strengthened marriage, depend-
ing on factors characterizing the relationship. It seems that
the unique challenges these parents are facing as a couple
have a powerful influence, whether destructive or beneficial.
Also, some of the ‘growing’ parents in our study reported
high levels of involvement by both parents in daily tasks.
Ooi et al. (2016) suggested that parents who have strained
relationships describe less time spent together and that these
parents’ relationships are characterized by less emotional
and practical support. These findings strengthen the surpris-
ing positive correlation that was found in families of chil-
dren with ASD between enmeshment and better adjustment
(Fleischmann 2005; Altiere and Kluge 2009), as opposed to
the accepted view of enmeshment as a destructive element
in family systems (Minuchin 1974). Our finding also relates
to the work of Garcia-Lopez et al. (2016), who found that for
mothers and fathers of children with ASD, supportive dyadic
coping was related to both their own and their partner’s rela-
tionship satisfaction and parental adaptation. Hence, it seems
possible that feelings of unity in the family as well as rela-
tionship satisfaction may contribute to positive adaptation
and even growth in these challenging circumstances.
Another interpersonal factor described by our partici-
pants is the strong positive relationship of the parent with
the child. Kasari and Sigman (1997) pointed out that chal-
lenging behaviors associated with the ASD phenotype might
contribute to the overall experience of stress among the
parents, and an ‘autistic’ interaction style may force par-
ents to design their reactions, thus neutralizing some of the
spontaneity and natural quality of the relationship (Frith
2003). Despite these challenging circumstances, parents in
our study spoke of deep and loving connections with their
children. Furthermore, parents’ intensified involvement with
their child with ASD made them view this relationship as
special in comparison to relationships with their other chil-
dren. This is concordant with Ooi et al.’s, (2016) report that
parents found joy and felt blessed in their relationship with
their child with ASD, both generally and specifically, when
the child achieved a developmental milestone or expressed
affection towards his parents.
Finally, in accordance with the prediction of Tedeschi
and Calhoun’s model, parents described a ‘natural selec-
tion’ process of their interpersonal relationships outside
the family: while some relationships were strengthened,
and new intimate associations were formed, other rela-
tionships were lost. The involvement of parents in support
groups, in which they have a chance to meet other parents
undergoing similar experiences, was also described as ben-
eficial for parents’ interpersonal relationship development
(Ooi et al. 2016).
The theme concerning new possibilities parents recog-
nized within themselves, their professional world and their
involvement in the social realm by activism appears simi-
lar to Tedeschi and Calhoun’s factor describing growth in
more general terms as consisting of the identification of
new alternatives or the choice of a different life course. A
political activism route or a career within the autism com-
munity was previously described by others (Gray 2001;
Ooi et al. 2016; Ryan and Runswick-Cole 2008), but unlike
our findings, it was not perceived as a growth experience.
Themes’ Association with the Crisis‑Related Growth
Model
The themes found in the present study can be joined with
past works to create a panoramic view of parents’ growth,
beyond concepts of ‘adjustment’ or ‘resilience’ (Bayat
2007; King et al. 2009; Phelps et al. 2009; Zhang et al.
2015; Ooi et al. 2016; Hannon and Hannon 2017; Potter
2017). Another qualitative study which supports this par-
enting type as a possible catalyst for positive experiences
was conducted by Myers et al. (2009), who asked par-
ents how their child influenced their life. 24 themes were
formed from the responses, 15 negative and 9 positive. All
the positive themes reported by Myer et al. also emerged
in our results. This combined outlook, as well as the find-
ings of other works presented here (Bayat 2007; King et al.
2009; Zhang et al. 2015), validates the feasibility of per-
sonal growth resulting from parenting a child with ASD.
References to traumatic elements (Gray 1998; Gombosi
1998; Klauber 1999; Casey et al. 2012) and crisis peri-
ods, made here by parents, offer the possibility of growth
resulting from the coping process. As shown, the emerging
themes match those described by Tedeschi & Calhoun in
their crisis-related growth model: parents to children with
ASD who experience growth provide descriptions similar
to those often described following a significant crisis, as
specified by the five factors of the model. The original
five factors were turned into four in our study, as Tede-
schi and Calhoun’s ‘experience of the world’ factor was
merged with the ‘spiritual-existential change’ factor. For
our participants, the existential change manifested itself
in daily living and vice versa, and thus the two could not
be separated. Several themes were also added by parents
in our study, including enhanced awareness to emotional
experience, encounters with human diversity, the forma-
tion of unique friendships, political activism, and unique
career changes.
13

Cultural Differences in Theme Structure
When comparing the emerging themes in our Western-based
sample of Israeli parents with Zhang et al.’s (2015) report
on parents from mainland China, some differences appeared.
Spiritual-existential development was the only theme not
clearly evident in the work of Zhang et al. (2015). This
finding was attributed to the different cultural context of
religious practice and disclosure in China, compared with
Western countries. The authors suggested that other aspects
of growth expressed in terms of personal strength, such as
being compassionate, good-doing and helping others, may
be viewed as ‘spiritual’ in Western countries. Other recent
works stressed the way that culture affects parents’ difficul-
ties, coping and overall experience of the diagnostic journey:
Tait et al. (2016), who explored the experiences of parents
to children with ASD living in Hong-Kong, reported that,
unlike Western parents, they were not proactive in seek-
ing early diagnosis for their children due to several factors,
including how their cultural beliefs of causation, might offer
a less helpful understanding of the diagnosis compared with
Western society. According to Wang (2016), basic psy-
chological processes, and certainly complex ones, are not
immune to experience and culture. Whether one considers
cultural differences or similarities, the cultural lens is key
in achieving a complex, in-depth view of a phenomenon. It
seems that this is the case for understanding parents’ range
of experiences concerning their child with ASD, and spe-
cifically in relation to the process of post-traumatic growth.
The paths leading to growth may be adapted to the cultural
context in which parents reside, and therefore the five factors
specified by Tedeschi and Calhoun’s model might manifest
somewhat differently in different cultural environments.
Growth as a Process
The results of this study focus on content of growth themes.
However, the concept of ‘growth’ refers not only to an end
result but also to a progressive development, a process.
Alongside clear identification of growth experiences, par-
ents tended to compare their current experience to a past
one, stressing its developmental nature.
All narratives included references to a crisis period after
identifying difficulties in the child’s development or receiv-
ing the diagnosis. Descriptions of this period included trau-
matic images of parents’ worlds as they spoke of hurt, dole-
fulness, sadness, pain, anxiety, helplessness and shame. This
exhausting period lasts from a few months to a few years,
until a new balance can be achieved.
The most frequent description of growth was connected
to the encounter with the child as well as the need for self-
therapy; parents defined this encounter as one that sent them
on a soul-searching mission resulting in a new outlook on
13
Journal of Autism and Developmental Disorders
life. ‘Intense learning’ was a recurrent concept mentioned
in relation to this special parenting experience: self-learning
as an outcome of daily living and involvement in therapeutic
environments that emphasize reflection and development.
‘Searching’ is also an important motive in parents’ growth
process: searching for ways of living and thinking that would
enable better function and relief from distressing emotions,
as well as a search for clinical settings that would help them
to cope better through the acquisition of new tools and
supports.
Some parents discussed how motivation for growth
emerged from the need to fit their abilities to their child’s
special needs: the acquisition of new parenting skills turned
into an experience of positive change, which in turn enabled
better parenting and which extended into other domains of
life. Some reported growth in terms of an answer to or ful-
fillment of a deep psychological need, such as a beneficial
change they had to undergo or strengthening of an existing
characteristic in themselves. Sometimes, the realization of
positive change was, in turn, fuel for more growth.
The difficulty that emerged in this study’s attempt to clar-
ify the process of growth over time is not an unusual one
(Tedeschi and Calhoun 2004). Even models of growth pro-
cesses following crisis usually describe its route rather than
its mechanism. Zhang et al. (2015), identified four positive
factors that may make post-traumatic-growth more likely:
perceived social support, learning from a peer example,
applying an effective coping style and self-efficacy enhance-
ment. These factors no doubt further our understanding of
post traumatic growth; nonetheless, it seems that such a
complex process needs to be understood on many levels
and contexts.
Our results show that the first stages of parenting a child
with ASD are viewed mostly as a challenge, often with trau-
matic elements. Despite the challenges involved in seeing
these times in positive terms, it is obvious that the growth
process starts there. This period does not necessarily lead to
parents’ personal growth, but it may become growth promot-
ing because of its unbalancing nature. The imbalance can
lead to parents having their parenting abilities undermined,
having their self-conceptions challenged, and being forced
to adapt to a new situation, requiring a quick process of self-
change, which could, in turn, be experienced as enriching.
Limitations and Future Directions
Most of our participants were characterized as having a
medium to high socio-economic status. Since SES may
affect the perception of one’s life events, as well as the avail-
ability and the nature of support systems, the generalizability
of our findings may be limited. Future works would do well
to create a diverse, representative sample which incorporates
participants from various SES levels.
Journal of Autism and Developmental Disorders
The voluntary nature of participant recruitment and
participants’ awareness of the study’s subject may also
limit the generalizability of our findings. However, par-
ticipants’ references to painful experiences associated
with their parenting validate our finding’s authenticity and
reduce the chance of sugar-coated narratives. Two groups
of ‘growing’ parents emerged in the current study: parents
for whom growth was central to their parental experience
and parents who also experienced significant growth, but
for whom this experience was less salient in comparison
to negative aspects (see also Phelps et al. 2009). A larger
sample should be used to examine the prevalence of these
different personal growth experiences amongst parents of
children with ASD.
Furthermore, the differences between our findings and
those of Zhang et al. (2015) suggest that posttraumatic
growth should be further studied in a way that takes the
cultural context into account and provides findings regard-
ing differential growth processes that occur in different
cultures. By doing so, a larger, more diverse view of the
phenomenon can be gained.
Clinical Implications
New understandings regarding the experiences of parents
of children with ASD can be implemented in clinical set-
tings, helping parents improve their well-being (Zhang
et al. 2014; Jones et al. 2018). From the initial stage of
suspecting that their child may be developing atypically,
parents enter a turbulent, challenging time in their lives
(Hannon and Hannon 2017). Studies highlight parents’
needs for individually-adapted support throughout the
diagnosis process (Potter 2017), substantial post-diagnos-
tic guidance, and support along the life-span, especially
in transition periods (Crane et al. 2016; Tait et al. 2016).
Studies have shown that interventions based on mindful-
ness techniques (e.g., Jones et al. 2018) or acceptance and
commitment therapy (e.g., Blackledge and Hayes 2006)
help in reducing stress, increasing self-compassion, and
enhancing psychological flexibility in parents of children
with ASD. The employment of such techniques may also
support the process of growth. However, the integration of
growth-promoting therapeutic strategies in clinical work
should be conducted with care, since growth is a process
that mostly requires enabling circumstances as opposed to
direct guidance. The current study and other works high-
light the importance of acquainting therapists with the
possibility of post-traumatic growth in parenting a child
with ASD, along with the major themes that characterize
this process. These themes should be utilized in a manner
that is sensitive and adapted to parents’ current status and
perspective.
Conclusions
Past decades of adversity research have seen a move from
the mere documentation of hardship to the investigation
of adjustment and resilience. The current study adds to the
small existing body of knowledge and research in this area
by exploring themes of crisis-related growth in a Western
sample of parents of children with ASD. Our results sug-
gest that for some parents, the theoretical, empirical, and
clinical focus should be shifted from adjustment to growth.
Acknowledgments  We are grateful to our participants for openly shar-
ing their personal experiences, and to Prof. Rivka Tuval-Mashiach and
Dr. Yael Golan for their methodological advice.
Author Contributions  MYS and OG designed the study, MYS col-
lected the data and analyzed it with OG. EWB and OG wrote the final
manuscript. All authors commented on the manuscript and approved it.
Compliance with Ethical Standards 
Conflict of interest Authors EWB, MYS, and OG declare that they
have no conflict of interest.
Ethical Approval  The study was approved by the ethics committee
of the department of psychology, Bar-Ilan University. All procedures
performed in studies involving human participants were in accordance
with the ethical standards of the institutional and/or national research
committee and with the 1964 Helsinki Declaration and its later amend-
ments or comparable ethical standards.
Informed Consent  Informed consent was obtained from all individual
participants included in the study.
Appendix A: Interview Protocol
A. A general explanation regarding the study and its goals.
B. General information regarding the participant and his
family:
1. Tell me a bit about you and your family, so I can get
to know you better.
– Each parent in the household: Age, Extended
family, Education level, Occupation
– Each child in the household: Age, Occupation,
Diagnoses received.
– The child with ASD and his unique attributes
– Relationships in the family: Marital, Siblings,
Parents and Children.
– Family Routines and Every day life
13

C. The experience of parenting a child with ASD and per-
sonal growth aspects:
1. How would you describe your parenting experience?
  In case the participant asks for specific directions
or does not address the following subjects—enquire
about them directly:
– How did this parenting experience influence the
interviewee’s life, personality and the choices he
has made?
– How did the encounter with the child’s ASD
affect the interviewee’s thoughts and feelings
with regards to himself, the future and his sur-
roundings in general? Was there a specific part
of it that was more challenging than others?
– The parenting experience of undiagnosed sib-
lings: Similarities and differences, how do the
different types of parenting correspond with one
another?
2. Think of parenting as a process—how would you
describe the process you went through?
  In case the participant asks for specific directions
or does not address the following subjects—enquire
about them directly:
– Thoughts and emotions at time of receiving the
diagnosis and today.
– Thoughts and expectations with regards to par-
enting—before the child’s birth, after the diag-
nosis, and today.
3. To what extent do you view parenting a child with
ASD as something that has promoted growth in your
life? How do you see this growth?
4. What role do these growth aspects play in your
parental experience?
5. Have you experienced personal growth or empower-
ment resulting from this parenting experience? How
would you characterize this process? How does it
affect your life?
6. What do you suppose enabled this growth? Could
you identify certain characteristics of your parenting
experience to your child with ASD that contributed
to growth?
7. How did you experience the encounter with your
child’s ASD? Have you experienced a change in per-
sonality, views or principles due to this encounter?
If not, how did your views and principles help you
in coping with this parenting experience?
D. Summary and closing remarks
13
Journal of Autism and Developmental Disorders
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