How do Parents Manage Irritability, Challenging Behaviour, Non-Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis
Journal of Autism and Developmental Disorders
How do Parents Manage Irritability, Challenging Behaviour, Non- Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis
Elizabeth O'Nions 0 1 2 4 5
Francesca Happé 0 1 2 4 5
Kris Evers 0 1 2 4 5
Hannah Boonen 0 1 2 4 5
Ilse Noens 0 1 2 4 5
0 MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London , London , UK
1 Leuven Autism Research (LAuRes), KU Leuven , Leuven , Belgium
2 Parenting and Special Education Research Unit, Faculty of Psychology and Educational Sciences, KU Leuven , Leopold Vanderkelenstraat 32, P. O. Box 3765, 3000 Leuven , Belgium
3 Elizabeth O'Nions
4 Department of Child Psychiatry UPC, KU Leuven , Leuven , Belgium
5 Division of Psychology and Language Sciences, Department of Clinical, Educational & Health Psychology, University College London , London , UK
Although there is increasing research interest in the parenting of children with ASD, at present, little is known about everyday strategies used to manage problem behaviour. We conducted a meta-synthesis to explore what strategies parents use to manage irritability, non-compliance, challenging behaviour and anxiety in their children with ASD. Approaches included: (1) accommodating the child; (2) modifying the environment; (3) providing structure, routine and occupation; (4) supervision and monitoring; (5) managing non-compliance with everyday tasks; (6) responding to problem behaviour; (7) managing distress; (8) maintaining safety and (9) analysing and planning. Results suggest complex parenting demands in children with ASD and problem behaviour. Findings will inform the development of a new measure to quantify parenting strategies relevant to ASD.
ASD; Irritability; Non-compliance; Challenging behaviour; Anxiety; Parenting strategies; Behaviour management
Autism spectrum disorders (ASD) are
neurodevelopmental impairments characterised by difficulties with
communication, socialisation, and rigid and repetitive behaviours
(American Psychiatric Association 2013)
. Although not part
of the diagnostic criteria, problem behaviour is very
common in ASD, and is more severe in ASD compared to typical
development or in the context of intellectual disability
Blacher and McIntyre 2006; Brereton et al. 2006;
Eisenhower et al. 2005; Estes et al. 2009)
Problem behaviour in ASD includes particularly
troublesome features, such as self-injury, running away, aggression,
property damage, and inappropriate behaviour in public
(often termed “challenging behaviour”). Extreme irritability
(e.g., anger, frustration, distress, meltdowns), and persistent
non-compliance with everyday demands also present
considerable challenges. These behaviours have been identified
as important treatment targets in children with ASD
McGuire et al. 2016; Chowdhury et al. 2010)
parents report experiencing behaviours that necessitate
constant supervision, make the child stand out from others, and
provoke others’ embarrassment or annoyance as particularly
(Turnbull and Ruef 1996)
In addition, approximately 30–42% of youth with ASD
meet criteria for an anxiety disorder
(Simonoff et al. 2008;
van Steensel et al. 2011; White et al. 2009)
. There has been
debate as to whether anxiety represents a co-occurring
feature in ASD, or whether it arises as a result of cognitive
factors, or as a downstream consequence of problematic
interactions with the environment
(e.g., Bearss et al. 2016)
Parents reportedly attribute problem behaviour associated
with stressors (e.g., changes in the daily routine, feared
stimuli) to anxiety, due to the child’s arousal, distress, and
attempts to escape
(e.g., Bearss et al. 2016)
avoidance has also been reported in response to routine
requests in children with ASD (e.g., Lucyshyn et al. 2004),
evidenced by escape behaviours and arousal when demands
are pursued. Escape-driven avoidance appears to promote
the development of coercive cycles of parent–child
interaction surrounding daily activities, and the progressive erosion
of family routines
(Lucyshyn et al. 2004)
Problem Behaviour in the Family Context
Problematic responses to everyday situations in children
with ASD are thought to represent an interaction between
child cognitive factors and triggers in the environment to
which the child is sensitive. Child factors include poor social
awareness/abnormalities in social-information processing
(e.g., Dominick et al. 2007)
; heightened arousal or
(e.g., Bearss et al. 2016; Mazefsky et al.
(e.g., Marquenie et al. 2011)
; intolerance of
(e.g., Rodgers et al. 2012)
; and sensory
(e.g., Schaaf et al. 2011)
. Vulnerabilities manifest in
triggering environmental contexts, e.g., when feared stimuli
(e.g., Neufeld et al. 2014)
, in the context of
(Lucyshyn et al. 2004, 2015)
; in the absence of
parental attention/provision of specific activities
et al. 2011; Lucyshyn et al. 2004, 2007)
; when there are
changes in routines/environments
(e.g., Ludlow et al. 2012)
or when things are not ‘on the child’s terms’
2006; DeGrace 2004)
At present, relatively little is known about how parents
manage problem behaviour in the context of ASD.
Convergent evidence suggests that parents of children with ASD
adjust their parenting strategies. Mothers parenting children
with ASD reportedly spend 50% more time with their
children compared to parents of typical children (9.7 waking
hours per day on average, compared to 6.1 h)
. Qualitative studies report numerous
adaptations made by parents to scaffold the child’s inclusion in
activities, provide occupation and support the completion
of routine tasks (e.g., dressing, grooming, bathing)
Larson 2006; Schaaf et al. 2011)
. Parents also make more
effort to stimulate their child’s development compared to
parents of typically developing children
(Lambrechts et al.
2011; Maljaars et al. 2014)
The burden of managing children with chronically high
needs has a considerable impact on family members
. The severity of the child’s problem behaviour in the
context of ASD plays a major role in the severity of stress
that parents experience
(Davis and Carter 2008; Estes et al.
2009; Hastings et al. 2005; Lloyd and Hastings 2007)
Parenting stress and problem behaviour also appears to be under
reciprocal influence (Lecavalier et al. 2006). This is not
surprising, given that overwhelmed parents are less likely to be
able to respond adaptively to very extreme forms of problem
Considerable research exists on interventions to train
parents to manage problem behaviour in ASD. Parenting
interventions typically aim to increase parental knowledge, skills
and confidence in managing problem behaviour, by helping
parents to identify triggers, foster more positive interactions,
and address maintaining factors
(e.g., Hodgetts et al. 2013a,
. However, they vary considerably in philosophy, and
consequentially in the approach recommended. For example,
whilst some advocate positive approaches and target
(e.g., Lucyshyn et al. 2015)
incorporate consequences (e.g., time out) to dis-incentivise
(e.g., Agazzi et al. 2013; Armstrong and
Kimonis 2013; Armstrong et al. 2015)
. Still others aim to
foster parental psychological resources rather than teaching
a particular management approach
(e.g., Singh et al. 2007)
Strikingly however, beyond qualitative reports and case
studies, little is known about what parents really do in
practice. The aim of this study is to capitalise on the extant
literature from qualitative, observational and case studies
to identify how parents and caregivers spontaneously
manage problem behaviour in ASD. A synthesis of reports and
observations on this topic is necessary to provide a
rigorous platform to guide further investigation, and inform the
development of a new measure to quantify specific parenting
strategies relevant to the management of problem behaviour
This study uses a recently developed analytic approach
termed ‘meta-synthesis’ to address this question
and Harden 2008; Atkins et al. 2008)
. This approach,
derived from meta-ethnographic research (Doyle 2003),
makes it possible to synergise findings from a range of
sources, including qualitative studies and other empirical
literature. It is increasingly being applied to a range of
medical and applied research questions
(e.g., Sibeoni et al. 2017;
Daker-White et al. 2015)
. First, a systematic literature search
is conducted to identify relevant studies containing
information pertinent to the research question. Thematic analysis is
conducted to inductively generate descriptive themes and
summarise findings across studies (Thomas and Harden
2008). Descriptive themes are then organised into higher
level concepts that best address the questions that motivated
Given the exploratory nature of this work, we make no
specific predictions about our findings. Descriptive themes
will be used to inform the development of question items to
measure specific parenting strategies related to managing
problem behaviour in ASD.
The study procedure involved six stages: (1) definition of the
scope of the synthesis; (2) systematic search and
identification of relevant papers; (3) extraction of relevant material
from papers; (4) annotation of identified exemplars of
parenting strategies; (5) development of descriptive themes; (6)
critical appraisal and synthesis.
Definition of the Scope of the Synthesis
In line with prior work
(e.g., Lambrechts et al. 2011;
Maljaars et al. 2014)
, we conceptualised parenting strategies as
concrete, specific, observable behaviours that parents engage
in when interacting with their child. This included
behaviours that were goal oriented (aiming to prevent problem
behaviour), and response oriented (reactions to problem
behaviour). We extended the scope to incorporate parental
accommodations that had an indirect impact on child
behaviour (e.g., advance preparation or planning). This was
motivated by the relevance of these strategies to particular goals
regarding the management of child problem behaviours.
Child Problem Behaviours
Our focus was on dimensions of child problem behaviour
of particular theoretical and practical interest:
challenging behaviour, irritability, non-compliance or avoidance of
demands, and anxiety. This motivated the selection of search
terms for our database search. Child problem-behaviours
that were the target of parental intervention in our extracted
exemplars ranged in severity from mild instances of
noncompliance (e.g., non-completion of homework, breaking
rules in games), to severe challenging behaviour (e.g.,
physical attack, running off, self-injury).
Systematic Search and Identification of Relevant
The systematic search involved two screening phases. The
first phase assessed studies identified against the inclusion
criteria provided in Table 1. This yielded studies
reporting parenting strategies in the context of child problem
To identify relevant studies, a targeted search strategy was
implemented, involving (1) database searches (PsychINFO
and Web of Science), (2) a review of studies citing or cited
by those identified for inclusion on the basis of the database
search, and (3) a review of articles included in two relevant
(one on parenting children with
autism, the other on parents’ experiences of caring for
children with ASD; Ooi et al. 2016; DePape and Lindsay 2015)
This approach was chosen because indexing of parenting
strategies in response to problem behaviour in ASD within
databases was poor. Therefore, database searching alone was
not considered to be the most efficient way to find studies
containing relevant material.
The systematic search of PsychINFO and Web of
Science databases included studies available from database
inception until the 19th December 2016. A combination of
search terms was used, including
autis*—ASD—ASC—pervasive developmental disorder*—PDD* AND
demand*—challenging* AND parent* AND behav*. We
made the decision not to include other related terms with
wider usage outside of ASD (e.g., oppositional, disruptive),
because doing so would have resulted in an unfeasibly large
number of records to review. Notably, the aim of a
literature search conducted as part of a meta-synthesis is not to
identify all possible relevant records, but rather to identify
sufficient records to produce thematic saturation during the
The database search initially yielded 2284 papers (Fig. 1).
Duplicates were excluded, leaving 1961 papers. Of these,
1740 were excluded on the basis of the title or abstract
content as they were not relevant, and 219 papers were reviewed
in full (full texts for two potentially relevant articles could
aAutism spectrum disorder includes autism, Asperger’s syndrome, atypical autism or pervasive developmental disorder—not otherwise specified
Records iden fied through database
search (N = 2,284)
Records screened a er duplicates
removed (N = 1,961)
Records excluded based on review
of tle or abstract (N = 1,740)
Full-text ar cles assessed for
eligibility (N = 219)*
Full text ar cles excluded
(N = 174)
Full-text ar cles assessed for
eligibility (N = 336)**
Full text ar cles excluded
(N = 267)
Studies mee ng Phase 1 inclusion
criteria (N = 45)
New records iden fied from
reference lists and ci ng included
studies from database search
(N = 1,557 not previously screened)
Studies mee ng Phase 1 inclusion
criteria (N = 69)
Relevant records iden fied from
two meta-syntheses (N = 34)
Full texts reviewed a er duplicates
removed (N = 23)
Studies mee ng Phase 1 inclusion
criteria (N = 15)
Records excluded based on review
of tle or abstract (N = 1,211)
Full text ar cles excluded (N = 8)
not be retrieved). A total of 174 studies were subsequently
excluded because they did not meet the inclusion criteria
for in-depth screening (e.g., they did not contain reports of
parenting strategies; they did not have the specific focus of
non-compliance, irritability, anxiety and challenging
behaviour in ASD; they reported only fidelity to specific trained
intervention procedures; they did not describe an empirical
study or case description).
Next, the reference lists of the 45 articles meeting
inclusion criteria identified in the database search were “back
searched” for additional references, and Google Scholar’s
“cited by” feature was used to “forward search” for
articles citing them. Reference list and citation searching was
conducted during January and February 2017. This search
revealed 1557 records that had not been previously screened.
Of these, 1211 were excluded on the basis of the title or
abstract content as they were not relevant. In total, 336
papers were reviewed in full (full texts for 10 potentially
relevant articles could not be retrieved). Two hundred and
sixty-seven articles were subsequently excluded, leaving an
additional 69 studies meeting criteria for in-depth screening.
Finally, references were identified for full-text review
from two published meta-syntheses, retrieved during the
“forward search” of included articles
(Ooi et al. 2016;
DePape and Lindsay 2015)
. This revealed 34 potentially
relevant studies, of which 23 had not previously been reviewed.
Fifteen of the twenty-three articles met the inclusion criteria
for in-depth screening.
The second screening phase assessed whether the 129
studies identified in Phase 1 contained exemplars of
naturalistic parenting strategies in response to child problem
behaviour, either reported directly (e.g., quotes), or
presented descriptively as part of a case description, qualitative
or observational report (i.e. researcher-identified themes).
In order to meet this criterion, studies had to have collected
semi-structured interview data, open-ended parental reports
(e.g., open response text), or have reported descriptively on
observations or parent reports of parent–child interactions
(including case studies/ case descriptions). Studies that only
reported clinician- or researcher- defined parenting
strategies (e.g., parental directiveness, intrusiveness, warmth
etc., measured using questionnaires or structured
observations with no additional descriptions) were excluded. Of the
N = 129 studies, 56 were dropped. This left a final sample of
73 studies, of which n = 15 were case studies or descriptions,
n = 8 were case series, and n = 50 studies reporting
qualitative data or thematic analysis.
reported, and only descriptions of pre-intervention parenting
strategies were extracted for the analysis.
To address the aims of our synthesis, we were
concerned with the detail of the reported data, rather than the
rigour or conceptual development offered by any analyses.
Indeed, only a minority of studies explicitly considered
parent behaviours to manage problem behaviour in terms
of reported thematic constructs or conclusions. Therefore,
we did not include, exclude or weight articles based on an
appraisal of their quality.
Annotation of Identified Exemplars
The first stage of analysis involved annotating exemplars
to capture meaning and key content
(similar to line-by-line
coding; Thomas and Harden 2008)
. Separate annotations
were made to describe the goal of parenting strategy with
respect to child behaviour (implicitly or explicitly stated),
and the parenting strategy itself. For second order
exemplars (i.e. those already in the form of a summary),
annotations were drawn directly from the exemplar. Annotations
were initially made by one member of the research team
(EO for qualitative studies; HB for case studies/series), and
then reviewed and extended by a second (KE for qualitative
studies; EO for case studies/series). For qualitative studies,
87% of annotations relevant to parenting strategies came
from EO, and the 13% from KE. For case studies/series,
65% came from HB, and 35% from EO.
Extraction of Relevant Material
Development of Descriptive Themes
Developing our synthesis first involved a careful review of
included articles and the extraction of “first order
exemplars” (i.e. direct quotes from parents), and “second order
exemplars” (i.e. parent strategies presented descriptively
as part of a case description, qualitative or observational
report). Exemplars were identified from “Results” and
“Discussion” sections, and extracted in full into Microsoft Excel
spreadsheets by EO. Content extracted included both the
goal of the strategy with respect to the child’s behaviour
(where explicitly stated) and the parenting strategy.
In some cases, parents reported on strategies implicitly
reflecting (rather than actually describing) preventative
measures to avoid problem behaviour in their child (e.g., ‘we
have to monitor him 24 h a day’). Where these reports were
in the context of a study describing child problem behaviour
in our domains of interest, they were retained in the analysis.
However, if the study did not provide further contextualising
detail describing child problem behaviour, it was excluded.
Studies describing behavioural interventions were included
if pre-intervention (i.e. naturalistic) parenting strategies were
The second stage of the analysis involved organising
annotations from different studies into related areas to construct
descriptive themes. This involved an iterative process in
which members of the team repeatedly labelled and
reorganised exemplars into descriptive themes until they
achieved consensus. A total of 45 descriptive themes
identified in the analysis are presented here. All but one study
provided exemplars that fit within descriptive
Critical Appraisal and Synthesis
The final analytic stage involved organising descriptive
themes into broader concepts best able to address the
question of how parents manage problem behaviour in ASD.
This required the generation of concepts to summarise our
findings. The thematic structure developed over
discussions amongst the research team, and was modified until
consensus was achieved. Nine higher-order concepts were
identified, incorporating all descriptive themes.
Overview of Included Studies
Case Studies/Descriptions A total of 15 case studies or
descriptions were identified, presenting information about
15 children reported to have an ASD diagnosis, and 28
parents, 15 of whom were mothers. The mean age of children
was 6.53 years (range 3–13). Eleven out of 15 children were
male. Nine were reported to have an intellectual disability,
to be non-verbal or have limited speech (data unavailable
for two studies). All but one of the child participants was
reported to have problem behaviours that were our
particular focus (e.g., aggression, non-compliance, tantrums,
anxiety). The remaining study reported parent-identified
noncompliance with rules during games. Thirteen of the case
studies reported on families in the US, one reported on a
family in Canada, and one on a family in Turkey. Further
details are provided in Supplementary Table 1.
Case Series A total of eight case series were identified,
presenting information relating to 37 children, and 39 parents
(N not reported for one study). The pooled average age of
child participants was 7.83 years [range 2–15 (for n = 3
studies, mean of range used to estimate mean)]. Twenty-two out
of the 27 child participants for whom gender information
was available were male (data unavailable for one study),
and 14 out of 21 were reported to have an intellectual
disability, to be non-verbal/have limited speech, or to have
cognitive delays (data unavailable for three studies). All but
one case series reported that participants were selected due
to problem behaviours that were our particular focus (e.g.,
aggression, non-compliance, tantrums, anxiety). Three of
the eight studies included children not reported to have an
ASD diagnosis (n = 4 children). These studies were retained
in the analysis, and only exemplars pertaining to children
with ASD extracted. Six of the case series reported on
families in US, one reported on families in the UK, and one
reported on families from South Korea. Full details are
provided in Supplementary Table 2.
Qualitative Studies A total of 50 studies reporting
qualitative data or thematic analysis of qualitative findings were
included. The total number of parent participants across
studies was 1536 (N per study: range 4–493, median = 14,
information not reported for N = 1 study). Parents reported
on 1207 children (N not reported for N = 10 studies). The
mean age was 9.7 years (range 1–57, data unavailable for 18
studies). At least 17 studies included child participants aged
over 18 years (data on range unavailable for four studies).
On average, 82% of children were male (data unavailable
for 21 studies), and 56% percent of children were reported to
have an intellectual disability, to have been diagnosed with
autism rather than Asperger syndrome or PDD-NOS, to be
cognitively delayed, or to be non-verbal/have limited speech
(data unavailable for 28 studies). Four studies included a
minority of children without an ASD diagnosis, all of whom
presented similar challenges to the ASD sample. Six
studies had identified study participants due to problem
behaviours (e.g., aggression, non-compliance, tantrums, anxiety).
Twenty studies were based in the US, seven in Canada,
eleven in Australia, six in the UK, two in Turkey, one in
Singapore, one in China, one in Israel, and one in India. For
23 out of the 25 studies that reported information on
participant ethnicity, the majority of families were Caucasian. Full
details are provided in Supplementary Table 3.
Descriptive themes derived from the anlaysis, organised into
broader conceptual themes, are presented below, with
illustrative exemplars drawn from studies. Themes are
summarised in Supplementary Table 4, and references provided for
studies reporting exemplars associated with each sub-theme.
Accommodating the Child
Parents reported adapting routines to accommodate the child
by following the child’s ‘unique rules’ for how things should
(e.g., Ausderau and Juarez 2013)
. This involved
accepting the child’s preference for sameness
providing the same meal each night; Bagatell 2015)
following precise sequences of actions: “He [Bob] has a particular
round pillow, and then he has another pillow, and then he
has his blankets up and I put the pillow over the top. But
before he snuggles in, I have to have a drink of water ready
to go because if I don’t he screams out for water when I am
gone. So he has the smallest sip of water... and then he lies
down and if I don’t have the pillow there he screams for that
(Marquenie et al. 2011, p. 151)
. Parents avoided doing
things that the child disliked, which were likely to provoke
(e.g., not talking to their older daughter
when the younger daughter with a disability was present;
Lucyshyn et al. 2004)
Parents planned activities to accommodate the child to
reduce the risk of problem behaviour
(e.g., Farrugia 2009;
Fletcher et al. 2012)
. This included doing things at the time
of day when the child functioned best, attending events
when they were less crowded
(Fletcher et al. 2012; Schaaf
et al. 2011)
, and locating activities of interest to the child in
advance of outings (e.g., Larson 2006).
Parents reported adjusting expectations depending on
the child’s mood
(e.g., Larson 2006; Foo et al. 2015)
example, after a day at school, parents reduced demands to
allow for the fact that the child’s energy levels were depleted
(Fletcher et al. 2012). Parents also adapted behavioural goals
so that they were achievable
, and gave extra
time to complete tasks
(Safe et al. 2012)
. They took cues
from the child when deciding whether to pursue an activity:
“[We will] get up in the morning. See what he’s like when
we get up and then we’ll make plans of what we’re going
(Gray 2003, p. 638)
. They also took the child home
early if they seemed to be finding it hard to cope during
(e.g., Fletcher et al. 2012)
Parents reported setting priorities and picking battles
when deciding whether to insist on things to manage the risk
of outbursts and difficult behaviour
(e.g., Safe et al. 2012;
Larson 2006; Farrugia 2009; Marquenie et al. 2011)
also gave latitude with regards to rules and expectations that
applied to other family members, e.g., excusing the child
from sitting at the table to eat with the family, or allowing
the child to withdraw or engage in repetitive calming
behaviours in public
(Ausderau and Juarez 2013; Bagatell 2015;
Marquenie et al. 2011; Larson 2006)
Parents reported reducing demands when problem
(e.g., Ausderau and Juarez 2013; Marquenie
et al. 2011)
: “Three parents independently stated that
attempting to enforce routine related demands on their child
by not backing off in the face of problem behavior would
only exasperate stress levels in the home and might lead to
the break-up of the family (e.g., seeking out-of-home
placement for the child).” (Lucyshyn et al. 2004, p. 15). Parents
also gave in to the child’s demands for activities or
attention to reduce the likelihood of extreme disruption
Lucyshyn et al. 2004; Divan et al. 2012; DeGrace 2004;
Koydemir-Özden and Tosun 2010; Pengelly et al. 2009)
the child wants to get into the car and have a ride, you must
do it, otherwise he gets ill-tempered, yells at midnight, you
won’t believe it, one night I had to drive him around from
01 till 04 in the morning, then I slept for 2–3 h and went to
(Aylaz et al. 2012, p. 399)
Modifying the Environment
Parents reported making an effort to limit their child’s
exposure to sensory stimuli that they found aversive. This
included avoiding using noisy appliances when the child
was present and minimising exposure to problematic food
(e.g., Schaaf et al. 2011, Dickie et al.2009; Duignan
and Connell 2015)
. Parents also attempted to avoid
situations (e.g., activities, events, places) that the child found
difficult: “There are things that you say to yourself like this
is too big, this room, there are too many people here, it’s too
loud, we gotta go.” (Schaaf et al. 2011, p. 383). In particular,
parents avoided events that were over-stimulating, or which
involved feared stimuli
(e.g., Bagatell 2015; Schaaf et al.
2011; Neufeld et al. 2014)
. They also avoided new or
(Mount and Dillon 2014)
Parents reported limiting social activities and outings
with the child
(e.g., shopping, visiting restaurants; Divan
et al. 2012; Gray 2003; Myers et al. 2009, p. 680)
avoided taking the child to friend’s houses or family events,
or strictly controlled the time they spent there: “It’s 1 h max;
otherwise, it can be a disaster.”
(Bagatell 2015, p. 55–56)
Frequently, the child’s difficulty tolerating novel
environments resulted in one parent staying at home with the child
(e.g., Preece and Almond 2008)
, reducing the risk of an
outburst or behaviour that others would find annoying or
distressing. Avoiding outings altogether accommodated
the child’s preference for sameness: “We stayed home most
of yesterday. We couldn’t go out anyway because it’s his
routine. Couldn’t leave the house”
(Hodgetts et al. 2013a,
Providing Structure, Routine and Familiarity
Parents reported sticking to fixed routines to manage daily
(e.g., mealtimes, bedtimes, bathing, dressing
etc.; Larson 2006)
. This reduced the likelihood of the child
encountering novel or unexpected stimuli, and thus the risk
of an outburst
(Schaaf et al. 2011)
. Routines were also used
to help the child transition from one activity to another
(Kuhaneck et al. 2010)
. Families were motivated to stick
to routines to reduce the risk of problem behaviour: “His
father...hadn’t poured his glass of milk yet [for breakfast]
and Nathan just decided that [his dad] had ruined his whole
day. … He [didn’t understand that his dad] doesn’t know
automatically that he needs a glass of milk…You have to
ask [Nathan] if he wants a glass of milk and let him say
“yes.” Because if you don’t ask him, then he gets mad when
you give it to him…It’s like a dance.”
(Larson 2006, p. 73)
Parents also reported providing structure and occupation
for their child at all times, in particular during “empty” time
(e.g., Turnbull and Ruef 1996)
; “[…] the days that are the
hardest are like Monday, the public holiday, because it was
raining and we really had to work hard… to keep him
(Duignan and Connell 2015, p. 203–204)
Parents used picture schedules or lists to inform the
child about upcoming activities, so that they knew exactly
what to expect: “Being able to talk your child through the
steps, like you said, through a white board or, for my child
who’s nonverbal, being able to write it out for him so he
can see exactly what’s going to happen, we’re going to
have to drink something before we can leave, we need to
(Johnson et al. 2014, p. 389)
. Schedules could
also reduce anxiety in non-routine situations (e.g., in a
hospital setting): “[…] she [the nurse] learned that this
child was high functioning and cognitively aware of his
pain and the management of it, but obsessed with wanting
to control his pain medications. With the father’s input,
the nurse developed a schedule of times for medication
administration, nursing procedures, meals, and any lab
or procedural studies being planned for the next 24 h.”
(Scarpinato et al. 2010, p. 252)
. Visual reminders were
also used by parents to facilitate performance of daily
routines and transitions between activities
(e.g., Clarke et al.
1999; Fettig et al. 2015)
Parents informed the child in advance about any changes
in routine: “There has to be a long conversation about
numerous plans. She has to have routine and scheduling;
we have a calendar... but mostly she prefers to repeatedly
verbalise what her arrangements are until you all want to
(Duignan and Connell 2015, p. 204)
prepared their child for events by giving details in advance
Johnson et al. 2014; Bearss et al. 2016)
: “Even to get his
hair cut, I have to tell him a week ahead… last night I said,
“Okay, there are going to be six people here and there’s
going to be two kids”. And I said, “All you have to do is
say hello to them and then you can go wherever you want to
go”” (Gray 1997, p. 1101). This sometimes involved using
“social stories” or scripts to model the steps of an activity,
or showing the child pictures of new people or places to
(e.g., Ludlow et al. 2012; Johnson et al.
. Advance notice was essential in helping the child
tolerate new things: “[…] if we have to, on the spot, break it
to him that, no, there’s somebody else you have to see, every
point is a trigger point for a massive meltdown’’
et al. 2014, p. 389)
Parents attempted to keep things as predictable and
familiar as possible e.g., avoiding having visitors in the home
when the child was around
(e.g., Ludlow et al. 2012;
, and giving adequate warning before transitions
(Kuhaneck et al. 2010; Safe et al. 2012)
. Familiarity was
perceived as helpful reducing problem behaviour: “He tends
to do best with well-practiced activities and activities that he
does within the context of a structure and with people and an
environment that he’s familiar with […] when it’s not a
practiced skill or he’s not given that structure, and/or he doesn’t
understand what’s going on, then we will see a spike in sort
of negative behavioral issues.” (Johnson et al. 2014, p. 389).
Parents reported that introducing new things
gradually helped the child to cope: “When he tries something
new, the first time he is going to be really mad, the second
time he is going to be a little pissed but he is going to do
it, and the third time he does it, it is fine.”
(Stoner et al.
2007, p. 30)
. Introducing things step-by-step, e.g., visiting
places ‘just to look’ before any demands were placed on
(Stoner et al. 2007)
gradually built up their
tolerance, which in turn increased their repertoire of
activities: “Two years ago, we couldn’t go to the beach... [He
screamed] like you were skinning him...he couldn’t deal
with the sensory things, the sand, the sun, the noise of the
waves. He would literally hide under a blanket… So we
would have to take him home… I knew it was torture for
him, but [gradually we’d go back] for just a half hour [and
then] go home… Now he loves the beach... we can go to
(Larson 2006, p. 76)
Supervision and Monitoring
Parents reported needing to supervise their child at all
(e.g., Zhou and Yi 2014; Fong et al. 1993; Myers
et al. 2009)
: “If we’re lucky, he gets up at 6, and if we’re
not you get up at 3, 4… And the minute he’s up, you’re
on… Keep him in [the house]. Try to feed him … make
sure he’s entertaining himself in a quieter way”
2010, p. 20)
. Supervision was required to ensure timely
parental intervention, particularly when out in the
community: “Someone needs to be monitoring his behavior at
all times. …What’s going to make another mom say ‘Get
your rotten kid away from my kid!’? You kind of have to
(Schaaf et al. 2011, p. 383)
. Supervision was
also necessary during routines to compensate for
difficulties remaining on task
(e.g., Larson 2010)
Parents described needing to stay alert and ready to
intervene: “You always have to be there. To avoid
damage, you have to grab him, and you have to be super fast.”
(Hodgetts et al. 2013b, p. 169)
. Vigilance was particularly
important in potentially uncertain situations, such as when
out in the community or interacting with others
Fairthorne et al. 2014)
, to mitigate the risk of problems: “We
go to family get-togethers, and their kids just run around,
the parents are drinking wine and not paying attention,
and the two of us, they’re like, ‘you need to relax.’ We
can’t. We literally have to be there around our kids for
(Hodgetts et al. 2013b, p. 169)
. Vigilance was also
required in potentially dangerous everyday situations
when the child had access to cutlery, or when travelling by
car, Bourke-Taylor et al. 2010)
Indicators of the child’s stress and emotional state
were a particular target of parental vigilance
. Parents reported making an effort to keep the
child’s mood stable
(e.g., Sabapathy et al. 2016; Larson
: “Well, it is almost like a home with an alcoholic.
You walk around on eggshells because you do not want
to possibly upset them in anyway. It is just that you are
walking on eggshells 24 h a day.” (Woodgate et al. 2008,
p. 1079). Extra effort was required in new or potentially
problematic situations: “I can’t go blindly into any
situation … You really have to kind of do a quick overview
of the situation knowing what’s going to bother whom.”
(Larson 2010, p. 23)
Managing Non‑Compliance with Everyday Tasks and Activities
Parents reported intervening to assist the child with daily
activities, such as dressing
(e.g., Clarke et al. 1999; Blair
et al. 2011)
: “David would often lie on his bed looking at
the ceiling or wall while holding the clothing in his hand
until his mother came in to help him. His mother reported
that David was physically capable of dressing himself and
would often do so quickly before going to a preferred
location such as a park.”
(Bailey and Blair 2015, p. 224)
Parental intervention reduced performance demands and thus
decreased the risk of frustration-related problem behaviour:
“Her parents reported that as a result of Katherine’s problem
behaviors, they had to do everything for her, including dress
her, feed her, and help her complete daily hygiene tasks.”
(Lucyshyn et al. 2007, p. 133).
Parents also gave the child repeated cues to do things,
including verbal reminders and physical prompts
Hampshire et al. 2016; Neely-Barnes et al. 2011)
used strategies when making demands to reduce the
likelihood of non-compliance, e.g., linking activities to the child’s
special interests (Larson 2006), tricking the child
2006; Cullen and Barlow 2002)
, or giving choices
2006; Johnson et al. 2014)
. Gentle persuasion was also used
to coax the child into doing things (e.g., “David, a father
of a 10-year-old girl with autism, explained how his child
would sit down and refuse to be moved: ‘‘Sometimes I have
to wait it out and try to coax her.””)
(Neely-Barnes et al.
2011, p. 214)
Parents reported using reward systems (e.g., positive
behaviour charts), and bargaining to motivate good
behaviour and compliance with daily activities
2015; Dunlap et al. 1994; Fong 1993)
: “He has to take two
bites of a non-preferred food and then reward him with a
preferred food. So you know, it’s not like the most relaxing
(Schaaf et al. 2011, p. 381)
. They also praised the
child for appropriate behaviour
(Agazzi et al. 2013;
Armstrong and Kimonis 2013)
Parents reported persisting with routine demands despite
the child’s protests, using a variety of strategies: “Michael
would often kick and scream when asked to comply with
morning activities […]. The family would continue to
deliver verbal demands to comply with activities and would
try to ‘‘get him out of the bad mood’’ by tickling or chasing,
eventually reverting to yelling, holding him down if he was
kicking excessively, or leaving him alone and trying again a
few minutes later.”
(Sears et al. 2013, p. 1010)
Responding to Problem Behaviour
Parents reported that distracting the child with activities
could divert them from problem behaviour
(e.g., Cullen and
Barlow 2002; Fettig et al. 2015)
, and pre-empt outbursts in
(e.g., Sears et al. 2013; Weiss et al.
. Distraction often involved specific activities or items:
“[…] each family had developed their own “must have”
items. For all the families, technology played a key role.
Phones, tablets, and other hand-held devices were common
items for families to have charged and ready for an outing.”
(Bagatell 2015, p. 55)
. Children could also be given a task
(e.g., pushing the trolley in a shop, Schaaf
et al. 2011)
. At home, families put videos on for the child to
pre-empt problems and give family members some free time
(e.g., DeGrace 2004; Marquenie et al. 2011)
When the child became difficult, parents reported
attempting to ignore their demands (e.g., saying “No”,
ignoring requests to go to particular places)
(e.g., Bailey and Blair
2015; Marquenie et al. 2011)
, and avoided drawing attention
to difficult/inappropriate behaviour in public
NeelyBarnes et al. 2011; Gray 1993)
Parents reported explicitly teaching the child what is
appropriate behaviour, providing verbal explanations and
(Armstrong and Kimonis 2013; Ökcün and
Akçin 2012; Beer et al. 2013)
. They gave verbal reprimands
in response to problem behaviour (e.g., saying “Don’t”,
(e.g., Blair et al. 2011; Dunlap et al. 1994; Gray
1993; Johnson and Whitman 1978)
. They also established
boundaries by setting ground rules in potentially difficult
(e.g., when going into a shop where the child might
want to buy things; e.g., Ryan 2010)
, and gave punishments
by removing items or privileges
(e.g., Moes and Frea 2000;
Hebert 2014; Armstrong and Kimonis 2013)
Parents shouted, yelled and conveyed negative affect in
response to aggression or problem behaviour
and Singer 2001; Vaughn et al. 2002; Bailey and Blair
. Time-out was also used
(e.g., Agazzi et al. 2013;
Armstrong and Kimonis 2013; Blair et al. 2011)
this could prove challenging: “They had tried using time-out
but felt that it was totally ineffective with Carrie because
she would yell or leave the time-out area.”
(Armstrong et al.
2015, p. 7)
. Parents also reported using physical punishment
in response to problem behaviour: “Her father voiced that
he came from “old-school” parenting, but had found that
spanking and other forms of punishment such as removing
items or privileges, had little effect on Carrie’s behaviour.”
(Armstrong et al. 2015, p. 7)
When managing extreme distress (e.g., outbursts,
meltdowns), parents attempted to comfort the child by providing
additional sensory activities, verbal attention (e.g., telling
the child “it’s ok” or asking “what’s wrong?”), or physical
attention (e.g., hugs, holding or caressing the child)
Schaaf et al. 2011; Becker-Cottrill et al. 2003; Bourke-Taylor
et al. 2010)
. They also reported removing the child from
(Fletcher et al. 2012; Nadeau et al. 2015)
instructing others to leave the vicinity
(Flood and Luiselli
to reduce distress and problem behaviour.
Parents made efforts to physically contain the child to
prevent dangerous or destructive behaviour or elopement. This
included keeping doors locked and installing motion
detectors or other security features so that the child couldn’t leave
the house unnoticed
(e.g., Myers et al. 2009; Bourke-Taylor
et al. 2010; Hutton and Caron 2005; DeGrace et al. 2014)
Parents kept the child in a different room away from his/
her siblings to mitigate the risk of aggression and injury to
(e.g., Gray 1997, 2003; Hodgetts et al. 2013b)
restricted access to valued possessions (particularly those
belonging to siblings), or potentially dangerous items (e.g.,
sharp objects) by installing locks on cupboards and doors
(e.g., Hutton and Caron 2005; Bourke-Taylor et al. 2010)
Physical restraint was used to manage aggressive or
(e.g., Preece 2014)
: “To actually physically
restrain him and not get head butted [is difficult], because,
you know, you’ve got his arms, your lying on top of him
and he wets his pants and I tell you, it’s a real traumatic
(Gray 1997, p. 1104)
. Restraint was also used
to prevent injury to siblings, stop the child running off
Fairthorne et al. 2014)
, or curtail dangerous behaviour:
“Leonard would engage in problem behavior, such as
hitting and kicking his mother or the car, throwing objects at
his mother, yelling, hanging out the car window, and not
wearing his seat belt appropriately if at all, which often
compromised the safety of himself and his mother while driving
[...] His mother would respond by yelling at him and
physically blocking him or putting him back in his seat”
and Blair 2015, p. 224)
Analysing and Planning
Parents reported thinking about what brought on an episode
of problem behaviour to develop a more strategic response:
“Now there is structure [but I] show a greater…respect for
his individuality…I’m not, this is the way we do it…because
that doesn’t work. My kid is screaming right back at me so
it’s not working… Next time see [what] happens. It goes
different… I’m going to be a smooth operator. Slide in there
and…study the situation.”
(Larson 2006, p. 72)
Parents also tried to anticipate problems that the child
might have in a situation
(e.g., Fletcher et al. 2012; Lasser
and Corley 2008)
. This was considered essential in
successfully negotiating outings: “I have to [be] two steps ahead
of him every waking moment when I’m not here in this
house… I have to plan ahead every step of the way… There
is always going to be a meltdown, something he doesn’t want
(Schaaf et al. 2011, p. 383)
. Preparations for outings
or events in the community involved making contingency
plans: “I knew Kyle was a little iffy so I told my husband that
we should sit on the bleacher on the end so that we wouldn’t
have to crawl over people in case we needed to leave early.
And we did. I took Kyle home and my husband stayed at
the game and watched Kelton play.”
(Bagatell 2015, p. 55)
Having a plan for any eventuality and changing plans
immediately if required allowed families to negotiate outings and
manage the risk of problem behaviour
(e.g., Marshall and
Long 2010; Pepperell et al. 2016; Bagatell 2015; Lutz et al.
The present study provides novel insight into everyday
parenting approaches in response to several important domains
of problem behaviour in ASD: irritability, non-compliance,
challenging behaviour and anxiety. The meta-synthesis
identified numerous descriptions of parenting strategies from
the extant literature, which were first summarised
descriptively, and then organised into broader concepts. In total,
nine higher order concepts were identified: (1)
Accommodating the child; (2) modifying the environment; (3)
providing structure, routine and occupation; (4) supervision and
monitoring; (5) managing non-compliance with everyday
tasks and activities; (6) responding to problem behaviour;
(7) managing distress; (8) maintaining safety and (9)
analysing and planning.
A key finding of this synthesis is the significant
complexity of parenting strategies to manage and pre-empt
problem behaviour, and the unrelenting burden that meeting
the child’s requirements presents. These data imply
quantitatively greater and qualitatively more complex parenting
demands and parental accommodation in relation to ASD
than that which routinely occurs in other populations. This
is evidenced by differences between the present descriptions
and the dimensions typically studied in parenting research in
non-ASD populations, such as positive parenting,
involvement, supervision and monitoring, consistency, and
(e.g., Essau et al. 2006)
Particularly striking in these data is the extent to which
parents manage the child’s propensity for outbursts or
problem behaviour by adapting situations, demands,
requirements etc. to suit the child, and avoiding direct challenge.
As noted by Lucyshyn et al. (2004), this reportedly reflects
a decision by parents to ‘preserve the family unit’, where
making concessions is perceived to be the lesser evil. This
suggests a need for considerably more intervention and
support to promote compliance and reduce difficult behaviour
than that which appears to be routinely available to parents.
Notably, other parenting strategies reported in this
synthesis include more traditional behavioural management
approaches, such as consequences, time-out, and
physical punishment; suggesting that some parents adopt a far
more directive approach to managing problem behaviour.
The variation in parental approaches highlights the need
for further systematic exploration of how specific child
profiles and family factors promote the use of particular
Studies that assess parenting in the context of child
psychopathology often assign a subjective value to particular
parenting strategies (e.g., ‘Lax’ parenting), based on
theoretical models of the drivers of problem behaviour. Given
that problem behaviour in ASD appears to have partially
distinct drivers related to specific cognitive vulnerabilities
(e.g., poor social awareness; sensory sensitivities; rigidity;
heightened anxiety/ emotional dysregulation), optimal
parenting strategies in ASD may differ from other populations.
Research is needed to systematically explore which
parenting strategies are associated with improvements in problem
behaviour over time. In addition, work is needed to examine
whether different approaches are required for children for
whom specific patterns of cognitive drivers appear to trigger
A strength of this study is its broad focus. We included
studies spanning multiple dimensions of problem behaviour
in ASD, and a range of ages and clinical profiles. Limitations
include the lack of cultural diversity. Study participants were
predominantly well-educated Caucasian families living in
developed western societies (see Supplementary Tables). In
other cultures, where parenting behaviours differ at
population levels, strategies to manage problem behaviour in ASD
could be quite different.
A further limitation was that studies using
systematically measured parenting behaviours were not included in
our synthesis, given that we aimed to develop a structure
independent of a pre-determined conceptual framework, and
embedded within natural contexts. This likely restricted the
scope of our findings. In addition, although we aimed to
study naturalistic parenting strategies, parents were likely to
have been influenced by previous experiences of attending
parent training, or advice given to them on managing
problem behaviour in ASD. Studies rarely provided information
on whether included parents had previously received support
or training, so it is impossible to estimate the possible impact
of this on our results.
A further consideration is that we cannot be sure, based
on the present work, whether the strategies described
are likely to be specific to parents of children with ASD
as opposed to other neuro-developmental profiles. We
included a minority of studies where a subset of
individuals did not have an ASD diagnosis, but reportedly
presented a similar behavioural challenge. A minority of
studies also included reports on strategies from parents
of children aged over 18 years. Further work is needed to
explore the impact of age and ASD symptomatology on
Whilst the present work focused on children with ASD,
many of these themes would also be recognisable by
parents of children with severe intellectual disability. Because
exemplars were drawn predominantly from qualitative
studies, it was not possible to link them to particular
individuals and thus explore the impact of intellectual
disability in these data. It remains possible that exemplars
disproportionately represent strategies adopted by parents
of children with intellectual disability. As such, further
work is needed to address their relevance across the full
range of ability level.
A further limitation of the study is that only one author
(EO) screened the papers against the study inclusion criteria,
and identified exemplars from full-texts. In the absence of
reliability data, we cannot assess the likelihood that relevant
studies were missed. However, the aim of a meta-synthesis
is to generate purposive rather than exhaustive sampling, to
identify sufficient information to facilitate thematic
. As such, the omission of relevant material
does not compromise the present findings.
This meta-synthesis drew predominantly on qualitative
studies, in which exemplars are drawn from specific
participants. In this context, exemplars were likely to come from
those presenting the most severe behavioural challenges. As
such, the use of these strategies for milder manifestations of
problem behaviour in ASD remains in question. Research
using tailored quantitative methods is now needed to
examine the ubiquity of these parenting strategies across the
spectrum of problem behaviour severity in ASD.
The majority of existing studies investigating
parenting strategies in ASD have used off-the-peg measures
formulated with broader clinical populations in mind
Shawler and Sullivan 2015)
. This analysis shows that many
of the strategies used by parents of children with ASD are
specifically targeted to manage particular vulnerabilities
(e.g., sensory sensitivities, rigidity, insistence on
sameness), or accomplish particular behavioural goals, and may
be relatively unique to this population. The present results
will be used to inform the development of a questionnaire
to measure everyday strategies relevant to the management
of problem behaviour in ASD. Researchers interested in
following the development and validation of this measure
are encouraged to contact the study authors.
Acknowledgments E O’Nions and H Boonen are supported by
postdoctoral fellowships from the Fonds de Soutien/Steunfonds
MargueriteMarie Delacroix. K Evers is supported by an FWO post-doctoral grant.
We are grateful to Lotte Janssen for her assistance with the study.
Author Contributions EO, FH and IN conceptualised the study and
EO carried out the analysis with contributions from KO and HB. All
authors contributed to the interpretation of results and reviewed the
Funding The study was funded by the Fonds de Soutien/Steunfonds
Marguerite-Marie Delacroix and the Belgian Fonds Wetenschappelijk
Onderzoek (FWO). This paper represents independent research
partfunded by the National Institute for Health Research (NIHR)
Biomedical Research Centre at South London and Maudsley NHS Foundation
Trust and King’s College London. The views expressed are those of
the authors and not necessarily those of the NHS, the NIHR or the
Department of Health. Open access for this article was supported by
King’s College London Springer Compact Agreement.
Compliance with Ethical Standards
Conflict of interest The authors declare no conflict of interest.
Ethical Approval This article does not contain any studies with human
participants performed by any of the authors.
Open Access This article is distributed under the terms of the Creative
Commons Attribution 4.0 International License
(http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use,
distribution, and reproduction in any medium, provided you give appropriate
credit to the original author(s) and the source, provide a link to the
Creative Commons license, and indicate if changes were made.
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