Parents experiences of living with an

adolescent diagnosed with an autism

spectrum disorder
Nicola Mount & Gayle Dillon
Aims: Parents of children with autism are reported to experience greater parenting stress than parents of
neurotypical children. This qualitative study examined parents experiences of living with their adolescent
with autism to ascertain their perceptions of psychological impact. In addition, parental coping strategies
and the contribution of the childs attendance at mainstream secondary school were considered.
Method: Nine parents of adolescents with autism were recruited from their childs school in the East
Midlands. Individual semi-structured interviews were recorded, transcribed, analysed and coded using
thematic and content analysis to gain insight into the stressors faced.
Findings: Main themes were: difficulties parents faced; effects on relationships; impact upon self; diagnosis
and support; coping strategies; school issues; and the future. Challenges faced by the parents were pervasive.
The need to maintain predictability in the childrens lives created a sense of burden and restricted
spontaneity in the parents lives. Communication and social difficulties could lead to outbursts of physical
or verbal abuse towards parents. Intense mother-child relationships added to family tensions. Mainstream
secondary school was perceived by some as a challenge. Parents reported being mentally and physically tired.
All participants used a range of problem-focused coping strategies and humour. Social support, positive
reframing and avoidant strategies were used variably. Having a diagnosis of autism helped both parents
to work together and accept the childs difficulties. Additional support was often dependent on family
circumstances.
Conclusions: To assist the best outcomes for young people with autism, collaborative working and clear
communication within the family unit and between family, schools and support services is imperative.
Keywords: parents; autism; support; school; coping.
HE IMPORTANCE of garnering
parental experiences regarding the
rearing of a child with an autism spectrum disorder (ASD) is increasingly recognised in the literature (Rattaz et al., 2014).
Collecting opinions from parents is important for the purpose of developing appropriate and effective support systems for both
the child and the wider family unit across a
range of settings. Each family unit is unique
and so too are the experiences that come
with having a child with ASD. Some of the
challenges associated with being a parent of
a child with ASD have important implications for the functioning of the parents and
the family unit and a brief discussion of these
is outlined here.

72

Unique parenting stresses

A 2007 American study of parents of
children with ASD suggested that the
parenting stresses for this group of parents
was unique (Schieve et al., 2007, p.121).
Parents commonly report feeling almost
permanently in a state of crisis and describe
facing non-remitting daily practical challenges. Unable to make changes to the
childs behaviour, parents often report
changing their lives and selves to make
accommodations (Hoogsteen & Woodgate,
2012; White et al., 2012).
A meta-analytic study of parenting stress
demonstrated large positive effects for
parents of children with ASD when
compared to those of typically developing
children and other disabilities (Hayes &
Educational & Child Psychology Vol. 31 No. 4
The British Psychological Society, 2014

Parents experiences of living with an adolescent diagnosed with an autism spectrum disorder
Watson, 2012), suggesting that parents of
children with ASD were more stressed than
other parents. A 10-year survey of parents of
older children and adults with autism by
Barker et al. (2011) found that although
parents anxiety levels fell over this period,
their levels of depressive symptoms
remained stable and at times when behaviour was more difficult, they worsened. Negative perceptions of the impact of having a
child with autism also increased during
adolescence (Carr & Lord, 2013). Further
sources of stress for these parents are lack of
professional support and social attitudes
resulting from a lack of understanding
(Glazzard & Overall, 2012), concerns about
the childs future (Faso et al., 2013), and
feeling isolated and stigmatised due to
peoples misjudgement of their child
(Wallace et al., 2013).

Effects on relationships
A UK study compared families with and
without children having any form of
disability and found that families with a
disabled child were significantly more likely
to be a single parent (Blackburn et al.,
2010). However, Freedman et al. (2012)
found, using American population data, that
divorce and separation were no higher in
families of a child with autism. Hartley et al.
(2011) found married partners were able to
support each other to cope with the challenges of parenting adolescents with autism,
although when fathers were distanced from
their child it could cause marital dissatisfaction. The equivocal nature of these findings
means it is important to explore in more
detail the impact on parental relationships
of raising a child with a diagnosis of ASD. It
is not just the effect on the parental relationship that is important, but also on other
family members, such as siblings. Research
has shown that parental time spent with a
disabled child is disproportionate, with
obvious implications for siblings (Welch et
al., 2012).

Educational & Child Psychology Vol. 31 No. 4

Parental coping strategies

Parents of children with ASD have been
shown to use a range of coping strategies
including: active avoidance (drugs, alcohol,
self-blame); problem-focused strategies
(seeking advice, help, support and implementing strategies); positive coping (use of
jokes and humour, reframing in a positive
light); active denial, and religious coping
(Hastings et al., 2005; Twoy et al., 2007).
Active avoidance strategies were shown to be
positively correlated to an increased risk of
suffering from stress, anxiety and depression, whereas positive coping was negatively
associated with depression.
Attempts to provide interventions to
support parents of children with autism
appear limited despite research that suggests
interventions may aid marital relationships
and family functioning (Higgins et al., 2005).
Preliminary investigations of acceptance and
commitment training for these parents show
significant pre- and post-test improvements
in depression and well-being measures
(Blackledge & Hayes, 2006). More recently,
Beer et al. (2013) demonstrated that a
mindful parenting style resulted in lower
levels of parental stress and depression.
Longitudinal investigations confirmed
parents of a child with ASD appear to change
coping strategies with time (Gray, 2006),
with mothers and fathers reportedly sharing
many similarities in coping styles. Mothers,
however, have been found to be more likely
than fathers to seek social support and
fathers more likely to use avoidance strategies (Glidden & Natcher, 2009). Mothers
also report using more problem-focused
coping than fathers. Actual, or perceived
social support for mothers of children with
autism has been shown to relate to multiple
factors including hardiness (Weiss, 2002),
decreased depression, increased well-being
(Benson, 2012) and daily mood (Pottie et al.,
2009). Physiological studies by Lovell et al.
(2012) supported these findings, with social
support buffering the effects of parenting
stress and challenging child behaviours
moderating the relationship between
73

Nicola Mount & Gayle Dillon

perceived stress and physical health
(Gallagher & Whiteley, 2012).
Evidence from independent crosscultural studies consistently shows the
mental health of these mothers is adversely
affected (Zablotsky et al., 2012). Furthermore, studies such as that by Giallo et al.
(2013) report significantly higher fatigue in
mothers of children with autism when
compared with a typically developing
sample. Maternal fatigue mediated the relationship between problem child behaviours
and stress, when tired mothers were more
likely to report the use of maladaptive
coping strategies (Seymour et al., 2012). It
has been suggested mothers suffering from
depression may over report their childs ASD
behaviours (Bennett et al., 2012).
Many studies concentrate their findings
on mothers of children with ASD. One of the
reasons for this is a struggle to generate sufficient evidence from fathers. Those studies
that do report on fathers experiences have
reported that the psychological well-being of
fathers is not as significantly affected when
compared with mothers (Jones et al., 2013).
Despite this, fathers of adolescents and
young adults with ASD do demonstrate
significantly greater depressive symptoms
than fathers of children with other developmental disabilities, suggesting both parents
are at risk of poor psychological well-being
(Hartley et al., 2012).
In support of this, Braunstein et al.
(2013) report that less than 15 per cent of
contemporary studies of parents of children
with autism consider the views of fathers.
Largely, this appears to be due to difficulties
in recruiting fathers and is perhaps a reflection of mothers often being the main caregiver. Nonetheless, it is important that the
views of both parents are sought, as their
experiences and perceptions may differ
(Sikora et al., 2013). Quantitative studies are
important as they collectively demonstrate
an impact on parental well-being and
familial functioning of having a child with
ASD, yet they do not provide depth of detail
of parental experiences. Having a deep
74

understanding of parental experience has

been put forward as being fundamental to
helping a child (King et al., 1999).
This study sought to extend the current,
limited, qualitative literature of UK mothers
and fathers personal experiences of
parenting adolescents with autism, primarily
to examine the range of difficulties they
faced and their perceptions of the psychological impact this had. Secondary aims were to
investigate the coping strategies parents used
and to identify contributing factors to
stressful experiences. Carrying out this
research can be used to inform the types of
support and interventions that may benefit
these families, particularly from educational
psychologists (EPs) whose role it is to support
children with a special educational need and
their families. Obtaining a holistic view of the
childs needs is imperative to providing effective interventions by psychologists. This
involves talking to a range of people involved
with a child, including parents who hold vital
information about their child and how they
are coping with school life (Dillon & Underwood, 2012), while not forgetting the importance of talking to the children themselves
(Dillon et al., 2014). The triangulation of
knowledge is key to ensuring education
professionals offer appropriate support and
thus this study contributes to a small, but
growing evidence base.

Methods
Participants
An opportunity sample was recruited from a
mainstream school-based support group for
parents of children with autism. A total of
nine parents participated (five mothers and
four fathers), with an average age of 41 years
(age range 30 to 50). Between them, they
were parents to six children with a formal
diagnosis of ASD (one girl and five boys),
who were aged between 11 and 16 (mean
13). All the children had attended mainstream educational settings throughout their
education and currently attended a mainstream secondary school (approximately
1400 students) in the East Midlands.
Educational & Child Psychology Vol. 31 No. 4

Parents experiences of living with an adolescent diagnosed with an autism spectrum disorder
An autism spectrum disorder had been diagnosed between the ages of 4 and 12 years
(median 10.5). The parents were biological
parents, apart from one set of adoptive
parents (child adopted <12 months) and
one stepfather, since the child was 3 years of
age. All families had two or more children
but only one child with autism. All participants were White British and in full- or parttime employment. Seven of the parents were
married and the remaining couple were in a
long term relationship.
Materials
The interview schedule was based on a questionnaire previously used by Ludlow et al.
(2011), to examine challenges faced by
parents of children with ASD. Additional
researcher designed questions were included
to explore the following areas: aspects of
school that contributed to the difficulties
faced; how parents perceived their partners
views compared with their own; and how the
advice they would give to someone whose
child had just received an ASD diagnosis.
A pilot interview was conducted to assess the
suitability of the additional questions; this was
not included in the analysis as the child
attended a different school.
Procedure
Individual interviews took place either in
school or at the participants home,
depending on the wishes of the parent. The
interviewer worked as a teaching assistant at
the school, having established and facilitated
the parents support group she was known to
all the parents and their children. Each
participant was provided with an information sheet and informed consent was
obtained. The interviews lasted up to 50
minutes. The interview schedule was
followed, with additional follow-up and
probing where appropriate. Interviews were
digitally recorded and transcribed verbatim.
Names and personal information were made
anonymous during transcription to maintain
confidentiality. The participants and their
families were assigned fictitious forenames.
Educational & Child Psychology Vol. 31 No. 4

Data analysis
The complete transcripts of all nine interviews were analysed following the methods of
thematic analysis described by Braun and
Clarke (2006); a six-stage data-driven
method. The researcher conducted the
interviews, transcription and thematic
analysis, allowing for full familiarisation and
reflection upon the data. The transcripts
were initially coded, an iterative process
leading to the development and review of
main themes and sub themes. Finally,
extracts were selected to demonstrate a
theme with subsequent analytic review. Prior
to inclusion in the results section some of
the data was minimally edited to remove
non-words, occurrences of partial sentence
repetition and superfluous information to
improve the readability of the extracts. Great
care was taken to preserve content accuracy.
This method was chosen as a means of
drawing themes from across the full set of
interviews and was one way to report on the
experiences of the participants.

Results and analysis

The seven main themes identified are
presented in Table 1. A sub-theme communication occurred across three main
themes. Interview content, extracts and
analysis are presented. The future was
mentioned least; although important to
parents, it is not discussed further here for
reasons of space.
Difficulties faced by parents
Resistance to change and rigid thinking of
the children created many of the daily difficulties perceived by the adults. One child
only ate foods of bland colours; another only
ate a range of three meals, limiting family
meals and the ability to dine out. Three
mothers laid out their adolescents clothes
daily to avoid confrontation. Noise levels and
a resistance to new or different environments seriously restricted family outings and
holidays. Children talked at their parents,
often about special interests, in one case,
electrical appliances. Two parents expressed
75

Nicola Mount & Gayle Dillon

Table 1: Main themes identified from transcript data.

Main themes

Sub-themes

Difficulties faced
by parents

Behaviours including: physical; verbal; food related; impulsive;

repetitive; social perceptual issues; delayed outburst;
lack of spontaneity; inflexible. Views of others.
Communication with child.

Effects on
relationships

With: partner; child; sibling; others. Communication.

Impact upon
self

Tiredness; frustration; guilt; regret; uncertainty what to do

for the best; constant; restrictive on personality.

Diagnosis and
support

Relief; shock; grief; process; lack of advice; need to push;

find your own support.

Coping
strategies

Routines; forward planning; acceptance; patience; seeing the

positives; humour; know the child; take advice; time-out;
smoking; alcohol; pretend to listen; working; understand the
childs perception; talk to other ASD parents.

School issues

Homework; other children; teachers knowledge of autism;

relationships with teachers. Communication.

The future

Preparation. Concerns.

issues with their adolescent not conforming

to the social norms of physical contact,
either being overly familiar with strangers or
avoiding physical contact with a parent.
Challenging behaviours included: crying,
shouting, physical assault, throwing items,
barricading themselves in their bedroom
and refusal to co-operate. As parents gained
a greater understanding of their child they
made adaptations to avoid situations known
to be difficult.
Everything is a struggle, so even from getting
up in the morning to getting him to do things,
to even going to bed, going out. He has to be
coerced into [pause] everything, you cant just
say Im going out were going out and well do
this today. (Rachel)
The difficulties associated with autism for
the parents here are pervasive; they impinge
on all aspects of the parents life with the
child.
76

Number of
participants
mentioning
theme (N=9)

Effects on relationships
The strength of the relationship between
mother and child was very clear in all interviews.
Its like she [daughter] can kind of only attach
to one person, if you like and that is Sarah and
not me, which can be seen as quite negative but
then it can be claustrophobic for Sarah because
she is always at Sarah. (Dave)
The father perceived his daughter has a
single focus with relationships: her mother.
He and his wife were at extremes in their
relationship with their daughter; neither was
seen as ideal. Four parents also spoke of
attempting to ensure siblings received
adequate parental involvement and the need
to justify the actions of their child with ASD
to siblings.

Educational & Child Psychology Vol. 31 No. 4

Parents experiences of living with an adolescent diagnosed with an autism spectrum disorder
Impact upon self
A father explained how he felt his personality contributed towards the impact of
having a child with autism.
It [life with child] is difficult, you know all the
time really. But Im a different person really to
what Amanda is, yeah. Things affect me, Im
a worrier [laughs], you know and everybodys
different thats the thing. I worry about the
most littlest thing, which is probably why Ive
been, [pause] yeah, quite poorly with things.
(Richard)
Richard acknowledged his anxious personality meant the experiences of living with a
child with autism affected him to a greater
degree than his wife. He found the constant
stresses had taken their toll and resulted in
ill effects on his health.
Diagnosis and support
All participants referred to the process or
outcomes of having a diagnosis, suggesting
this was significant for parents. As a teacher
of children with autism Clare was well aware
of the autistic signs her son exhibited for
over five years.
When I first found out about Daniel, I knew
what hed got, I knew. But when they tell you
its a bit Oh you go through that kind of like
a grieving stage that you think Oh, whats
going to happen to him in the future? Whats
going to happen with things hes not going to
do? You go quite negative at first but then you
have to get round to the idea and you have to
be positive. You have to try and think of all the
things that they are good at, they can do. All
the good qualities about that child because
theyve not changed, thats who they are.
(Clare)
Diagnosis confirmed her instincts, yet an
emotional response to the confirmation was
still experienced, not unlike grief; initial
shock followed by a sense of loss. Without
the diagnosis she perceived her son might
grow out of this, diagnosis removed this
belief. Diagnosis brought more questions
than answers and left her with a negative
perspective which required a cognitive shift
to reframe her thoughts enabling her to
Educational & Child Psychology Vol. 31 No. 4

accept and move forward. Autism is a part of

the child and there are positive aspects as
well as the negative.
Three families believed receiving a diagnosis helped them to take a shared perspective and move forward together as a couple.
Coping strategies
Difficulties faced by parents and how they
coped were not static. Five parents spoke of
accepting autism as a part of the child. All
participants used humour during their interviews a positive psychological strategy.
Nevertheless, one parent felt her sarcastic
sense of humour created difficulties at home
because her child did not understand jokes.
Practical problem-focused strategies such as
routines and planning ahead were used by
all of the participants, including thinking in
advance of speaking to the child, what to say,
how to say it and how this will be interpreted.
Two mothers spoke of using positive
reframing and three mothers used avoidant
strategies, such as taking time out, even if
only for five minutes standing outside. The
parents support group at the school was
cited as a useful resource by four parents.
I would say to try and find a support group for
themselves like weve got at school. I find that
really useful. Maybe not have any expectations
of themselves, you are not going to change the
child. Dont feel guilty its nothing that youve
done. Just enjoy them because I think they have
a lot of lovely qualities. You know, just enjoy
them and accept them for what they are like you
would have to accept a child with a physical
disability. (Sarah)
Support groups are not necessarily something offered directly to parents, they may
have to locate them for themselves but
belonging to a group can be beneficial. An
acceptance and understanding of autism is
important, because it is a part of who that
child is.
School issues
Three parents cited poor behaviour at home
occurred as the backlash of difficulties experienced in school.
77

Nicola Mount & Gayle Dillon

So if someones not quite got the
understanding, dont understand his needs it
frustrates him and he may not show that again
to that teacher or in that class hell bring it home
with him and obviously well get the backlash of
it. Thats how its always been You can tell as
soon as he walks through the door, if hes had a
good day or a bad day. (Dan)
From experience, parents can identify
potential issues through the childs body
language. The child may be unable to
express their difficulties in class and this
exacerbates the situation. This is possibly
because the teacher does not have sufficient
knowledge of autism or knowledge of the
individual to correctly interpret the childs
needs.
Five parents reported homework was a
difficult issue; either because the child could
not comprehend why they should do school
work at home, or did not understood what
they were required to do.

Discussion
The main themes were broadly in line with
those of other studies (Bundy & Kunce,
2009; Fong et al., 1993; Ludlow et al., 2011).
Parents faced multiple daily struggles as a
result of the behaviours their child
displayed. The pervasive nature of autism
made constant demands on parents psychological and physical well-being, creating
imbalances within relationships and family
functioning. Receiving a diagnosis helped
these parents accept autism as a part of their
child, enabling them to work together and
support each other (Samios et al., 2012).
Limited support or advice around coping
strategies was offered at diagnosis. Families
were often dependent on individual family
circumstances. Given the well-being benefits
of the psychological coping strategies
described in the introduction, parents and
their children could potentially benefit from
education and psychological interventions
delivered by EPs post-diagnosis to promote
successful coping earlier. To enhance family
relationships Flippin and Crais (2011) advocated fathers involvement earlier in parent78

child interventions. This is supported by the

intense, all-consuming mother-child interactions reported that could impact on relationships, leaving a mother with limited time
for maintaining relations with her partner
(Sawyer et al., 2010; Walsh & OLeary, 2013).
Evaluation of any such interventions should
consider an array of child and family measures (Karst & van Hecke, 2012) which might
include parental well-being, marital relationships and family functioning.
Fathers in particular suffered increased
parenting stress from externalised behaviours such as aggressive outbursts exhibited
by their children (Davis & Carter, 2008).
Such outbursts occurred typically as a consequence of misperception of social situations
and poor emotional regulation (Pouw et al.,
2013). Attendance at a mainstream school
sometimes resulted in challenging behaviours at home. Parents, schools and EPs need
to work together to teach adolescents with
autism strategies for emotional regulation
and when possible interpret social interactions. Ideally, everyone working within a
school requires autism training, knowledge
of the individual child and an understanding
that in some instances a child may appear to
be coping in school when they are in fact
experiencing difficulties. Parents are best
placed to provide information of idiosyncratic behaviours and successful strategies;
therefore open communication should be
encouraged. Banach et al. (2010) suggested a
school-based group to provide a collaborative
forum for parents to find support and
empowerment. EPs may also be instrumental
in offering solutions to schools and parents
with regards communicating and managing
appropriately differentiated homework tasks.
To support the best outcomes for young
people with ASD, collaborative working and
clear communication between families, EPs,
schools and other support services is imperative. Professionals involved in the diagnosis
of autism, schools and wider society need to
become more mindful and empathetic of
the difficulties faced by parents of adolescents with autism.
Educational & Child Psychology Vol. 31 No. 4

Parents experiences of living with an adolescent diagnosed with an autism spectrum disorder
This study has highlighted the particular
importance that school issues and thinking
about the future have for parents, which has
important ramifications for the way that
those involved with the family work with
them. The equivocal nature of the findings
from previous studies regarding the impact
of raising a child with special educational
needs on the family unit is important to
explore. This study offers support to findings
from other UK based studies that parents of
children with ASD do struggle to maintain
personal relationships as a result of the time
and energy invested in supporting the child.
The inclusion of fathers here is also important as previous work has typically focused on
the views of the mother. Knowing that whilst
there are similar stresses experienced by both
parents, the fact that fathers articulate some
differences in their experiences is an important consideration for those working with the
family. These issues could be targeted
usefully, for example, by EPs to aid family
functioning and help plan for the future.

Address for correspondence

Nicola Mount
Teaching Assistant,
Heanor Gate Science College,
Kirkley Drive, Heanor,
Derbyshire, DE75 7RA.
Email:
nmount@heanorgate.derbyshire.sch.uk
or
limedale.gmn@gmail.com
Gayle Dillon
Senior Lecturer,
School of Social Sciences,
Nottingham Trent University,
Burton Street,
Nottingham, NG1 4BU.
Email: gayle.dillon@ntu.ac.uk

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