THE IMPORTANCE of garneringparental experiences regarding therearing of a child with an autism spec-trum disorder (ASD) is increasingly recog-nised in the literature (Rattaz et al., 2014).Collecting opinions from parents is impor-tant for the purpose of developing appro-priate and effective support systems for boththe child and the wider family unit across arange of settings. Each family unit is uniqueand so too are the experiences that comewith having a child with ASD. Some of thechallenges associated with being a parent ofa child with ASD have important implica-tions for the functioning of the parents andthe family unit and a brief discussion of theseis outlined here.

Unique parenting stressesA 2007 American study of parents ofchildren with ASD suggested that theparenting stresses for this group of parentswas unique (Schieve et al., 2007, p.121).Parents commonly report feeling almostpermanently in a state of crisis and describefacing non-remitting daily practical chal-lenges. Unable to make changes to thechilds behaviour, parents often reportchanging their lives and selves to makeaccommodations (Hoogsteen & Woodgate,2012; White et al., 2012).

A meta-analytic study of parenting stressdemonstrated large positive effects forparents of children with ASD whencompared to those of typically developingchildren and other disabilities (Hayes &

72 Educational & Child Psychology Vol. 31 No. 4 The British Psychological Society, 2014

Parents experiences of living with anadolescent diagnosed with an autismspectrum disorderNicola Mount & Gayle Dillon

Aims: Parents of children with autism are reported to experience greater parenting stress than parents ofneurotypical children. This qualitative study examined parents experiences of living with their adolescentwith autism to ascertain their perceptions of psychological impact. In addition, parental coping strategiesand 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 EastMidlands. Individual semi-structured interviews were recorded, transcribed, analysed and coded usingthematic and content analysis to gain insight into the stressors faced.Findings: Main themes were: difficulties parents faced; effects on relationships; impact upon self; diagnosisand 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 restrictedspontaneity in the parents lives. Communication and social difficulties could lead to outbursts of physicalor verbal abuse towards parents. Intense mother-child relationships added to family tensions. Mainstreamsecondary 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 parentsto work together and accept the childs difficulties. Additional support was often dependent on familycircumstances.Conclusions: To assist the best outcomes for young people with autism, collaborative working and clearcommunication within the family unit and between family, schools and support services is imperative.Keywords: parents; autism; support; school; coping.

Watson, 2012), suggesting that parents ofchildren with ASD were more stressed thanother parents. A 10-year survey of parents ofolder children and adults with autism byBarker et al. (2011) found that althoughparents anxiety levels fell over this period,their levels of depressive symptomsremained stable and at times when behav-iour was more difficult, they worsened. Nega-tive perceptions of the impact of having achild with autism also increased duringadolescence (Carr & Lord, 2013). Furthersources of stress for these parents are lack ofprofessional support and social attitudesresulting from a lack of understanding(Glazzard & Overall, 2012), concerns aboutthe childs future (Faso et al., 2013), andfeeling isolated and stigmatised due topeoples misjudgement of their child(Wallace et al., 2013).

Effects on relationshipsA UK study compared families with andwithout children having any form ofdisability and found that families with adisabled child were significantly more likelyto be a single parent (Blackburn et al.,2010). However, Freedman et al. (2012)found, using American population data, thatdivorce and separation were no higher infamilies of a child with autism. Hartley et al.(2011) found married partners were able tosupport each other to cope with the chal-lenges of parenting adolescents with autism,although when fathers were distanced fromtheir child it could cause marital dissatisfac-tion. The equivocal nature of these findingsmeans it is important to explore in moredetail the impact on parental relationshipsof raising a child with a diagnosis of ASD. Itis not just the effect on the parental relation-ship that is important, but also on otherfamily members, such as siblings. Researchhas shown that parental time spent with adisabled child is disproportionate, withobvious implications for siblings (Welch etal., 2012).

Parental coping strategiesParents of children with ASD have beenshown to use a range of coping strategiesincluding: active avoidance (drugs, alcohol,self-blame); problem-focused strategies(seeking advice, help, support and imple-menting strategies); positive coping (use ofjokes and humour, reframing in a positivelight); active denial, and religious coping(Hastings et al., 2005; Twoy et al., 2007).Active avoidance strategies were shown to bepositively correlated to an increased risk ofsuffering from stress, anxiety and depres-sion, whereas positive coping was negativelyassociated with depression.

Attempts to provide interventions tosupport parents of children with autismappear limited despite research that suggestsinterventions may aid marital relationshipsand family functioning (Higgins et al., 2005).Preliminary investigations of acceptance andcommitment training for these parents showsignificant pre- and post-test improvementsin depression and well-being measures(Blackledge & Hayes, 2006). More recently,Beer et al. (2013) demonstrated that amindful parenting style resulted in lowerlevels of parental stress and depression.

Longitudinal investigations confirmedparents of a child with ASD appear to changecoping strategies with time (Gray, 2006),with mothers and fathers reportedly sharingmany similarities in coping styles. Mothers,however, have been found to be more likelythan fathers to seek social support andfathers more likely to use avoidance strate-gies (Glidden & Natcher, 2009). Mothersalso report using more problem-focusedcoping than fathers. Actual, or perceivedsocial support for mothers of children withautism has been shown to relate to multiplefactors 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 socialsupport buffering the effects of parentingstress and challenging child behavioursmoderating the relationship between

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Parents experiences of living with an adolescent diagnosed with an autism spectrum disorder

perceived stress and physical health(Gallagher & Whiteley, 2012).

Evidence from independent cross-cultural studies consistently shows themental health of these mothers is adverselyaffected (Zablotsky et al., 2012). Further-more, studies such as that by Giallo et al.(2013) report significantly higher fatigue inmothers of children with autism whencompared with a typically developingsample. Maternal fatigue mediated the rela-tionship between problem child behavioursand stress, when tired mothers were morelikely to report the use of maladaptivecoping strategies (Seymour et al., 2012). Ithas been suggested mothers suffering fromdepression may over report their childs ASDbehaviours (Bennett et al., 2012).

Many studies concentrate their findingson mothers of children with ASD. One of thereasons for this is a struggle to generate suffi-cient evidence from fathers. Those studiesthat do report on fathers experiences havereported that the psychological well-being offathers is not as significantly affected whencompared with mothers (Jones et al., 2013).Despite this, fathers of adolescents andyoung adults with ASD do demonstratesignificantly greater depressive symptomsthan fathers of children with other develop-mental disabilities, suggesting both parentsare 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 ofcontemporary studies of parents of childrenwith autism consider the views of fathers.Largely, this appears to be due to difficultiesin recruiting fathers and is perhaps a reflec-tion of mothers often being the main care-giver. Nonetheless, it is important that theviews of both parents are sought, as theirexperiences and perceptions may differ(Sikora et al., 2013). Quantitative studies areimportant as they collectively demonstratean impact on parental well-being andfamilial functioning of having a child withASD, yet they do not provide depth of detailof parental experiences. Having a deep

understanding of parental experience hasbeen put forward as being fundamental tohelping a child (King et al., 1999).

This study sought to extend the current,limited, qualitative literature of UK mothersand fathers personal experiences ofparenting adolescents with autism, primarilyto examine the range of difficulties theyfaced and their perceptions of the psycholog-ical impact this had. Secondary aims were toinvestigate the coping strategies parents usedand to identify contributing factors tostressful experiences. Carrying out thisresearch can be used to inform the types ofsupport and interventions that may benefitthese families, particularly from educationalpsychologists (EPs) whose role it is to supportchildren with a special educational need andtheir families. Obtaining a holistic view of thechilds needs is imperative to providing effec-tive interventions by psychologists. Thisinvolves talking to a range of people involvedwith a child, including parents who hold vitalinformation about their child and how theyare coping with school life (Dillon & Under-wood, 2012), while not forgetting the impor-tance of talking to the children themselves(Dillon et al., 2014). The triangulation ofknowledge is key to ensuring educationprofessionals offer appropriate support andthus this study contributes to a small, butgrowing evidence base.

MethodsParticipantsAn opportunity sample was recruited from amainstream school-based support group forparents of children with autism. A total ofnine parents participated (five mothers andfour fathers), with an average age of 41 years(age range 30 to 50). Between them, theywere parents to six children with a formaldiagnosis of ASD (one girl and five boys),who were aged between 11 and 16 (mean13). All the children had attended main-stream educational settings throughout theireducation and currently attended a main-stream secondary school (approximately1400 students) in the East Midlands.

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An autism spectrum disorder had been diag-nosed between the ages of 4 and 12 years(median 10.5). The parents were biologicalparents, apart from one set of adoptiveparents (child adopted

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Table 1: Main themes identified from transcript data.

Main themes Sub-themes Number ofparticipantsmentioningtheme (N=9)

Difficulties faced Behaviours including: physical; verbal; food related; impulsive; 9by parents repetitive; social perceptual issues; delayed outburst;

lack of spontaneity; inflexible. Views of others. Communication with child.

Effects on With: partner; child; sibling; others. Communication. 8relationships

Impact upon Tiredness; frustration; guilt; regret; uncertainty what to do 9self for the best; constant; restrictive on personality.

Diagnosis and Relief; shock; grief; process; lack of advice; need to push; 9support find your own support.

Coping Routines; forward planning; acceptance; patience; seeing the 9strategies 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; 8relationships with teachers. Communication.

The future Preparation. Concerns. 4

issues with their adolescent not conformingto the social norms of physical contact,either being overly familiar with strangers oravoiding physical contact with a parent.Challenging behaviours included: crying,shouting, physical assault, throwing items,barricading themselves in their bedroomand refusal to co-operate. As parents gaineda greater understanding of their child theymade adaptations to avoid situations knownto be difficult.

Everything is a struggle, so even from gettingup in the morning to getting him to do things,to even going to bed, going out. He has to becoerced into [pause] everything, you cant justsay Im going out were going out and well dothis today. (Rachel)

The difficulties associated with autism forthe parents here are pervasive; they impingeon all aspects of the parents life with thechild.

Effects on relationshipsThe strength of the relationship betweenmother and child was very clear in all inter-views.

Its like she [daughter] can kind of only attachto one person, if you like and that is Sarah andnot me, which can be seen as quite negative butthen it can be claustrophobic for Sarah becauseshe is always at Sarah. (Dave)

The father perceived his daughter has asingle focus with relationships: her mother.He and his wife were at extremes in theirrelationship with their daughter; neither wasseen as ideal. Four parents also spoke ofattempting to ensure siblings receivedadequate parental involvement and the needto justify the actions of their child with ASDto siblings.

Impact upon selfA father explained how he felt his person-ality contributed towards the impact ofhaving a child with autism.

It [life with child] is difficult, you know all thetime really. But Im a different person really towhat Amanda is, yeah. Things affect me, Ima worrier [laughs], you know and everybodysdifferent thats the thing. I worry about themost littlest thing, which is probably why Ivebeen, [pause] yeah, quite poorly with things.(Richard)

Richard acknowledged his anxious person-ality meant the experiences of living with achild with autism affected him to a greaterdegree than his wife. He found the constantstresses had taken their toll and resulted inill effects on his health.

Diagnosis and supportAll participants referred to the process oroutcomes of having a diagnosis, suggestingthis was significant for parents. As a teacherof children with autism Clare was well awareof the autistic signs her son exhibited forover five years.

When I first found out about Daniel, I knewwhat hed got, I knew. But when they tell youits a bit Oh you go through that kind of likea grieving stage that you think Oh, whatsgoing to happen to him in the future? Whatsgoing to happen with things hes not going todo? You go quite negative at first but then youhave to get round to the idea and you have tobe positive. You have to try and think of all thethings that they are good at, they can do. Allthe good qualities about that child becausetheyve not changed, thats who they are.(Clare)

Diagnosis confirmed her instincts, yet anemotional response to the confirmation wasstill experienced, not unlike grief; initialshock followed by a sense of loss. Withoutthe diagnosis she perceived her son mightgrow out of this, diagnosis removed thisbelief. Diagnosis brought more questionsthan answers and left her with a negativeperspective which required a cognitive shiftto reframe her thoughts enabling her to

accept and move forward. Autism is a part ofthe child and there are positive aspects aswell as the negative.

Three families believed receiving a diag-nosis helped them to take a shared perspec-tive and move forward together as a couple.

Coping strategiesDifficulties faced by parents and how theycoped were not static. Five parents spoke ofaccepting autism as a part of the child. Allparticipants used humour during their inter-views a positive psychological strategy.Nevertheless, one parent felt her sarcasticsense of humour created difficulties at homebecause her child did not understand jokes.Practical problem-focused strategies such asroutines and planning ahead were used byall of the participants, including thinking inadvance of speaking to the child, what to say,how to say it and how this will be interpreted.Two mothers spoke of using positivereframing and three mothers used avoidantstrategies, such as taking time out, even ifonly for five minutes standing outside. Theparents support group at the school wascited as a useful resource by four parents.

I would say to try and find a support group forthemselves like weve got at school. I find thatreally useful. Maybe not have any expectationsof themselves, you are not going to change thechild. Dont feel guilty its nothing that youvedone. Just enjoy them because I think they havea lot of lovely qualities. You know, just enjoythem and accept them for what they are like youwould have to accept a child with a physicaldisability. (Sarah)

Support groups are not necessarily some-thing offered directly to parents, they mayhave to locate them for themselves butbelonging to a group can be beneficial. Anacceptance and understanding of autism isimportant, because it is a part of who thatchild is.

School issuesThree parents cited poor behaviour at homeoccurred as the backlash of difficulties expe-rienced in school.

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So if someones not quite got theunderstanding, dont understand his needs itfrustrates him and he may not show that againto that teacher or in that class hell bring it homewith him and obviously well get the backlash ofit. Thats how its always been You can tell assoon as he walks through the door, if hes had agood day or a bad day. (Dan)

From experience, parents can identifypotential issues through the childs bodylanguage. The child may be unable toexpress their difficulties in class and thisexacerbates the situation. This is possiblybecause the teacher does not have sufficientknowledge of autism or knowledge of theindividual to correctly interpret the childsneeds.

Five parents reported homework was adifficult issue; either because the child couldnot comprehend why they should do schoolwork at home, or did not understood whatthey were required to do.

DiscussionThe main themes were broadly in line withthose of other studies (Bundy & Kunce,2009; Fong et al., 1993; Ludlow et al., 2011).Parents faced multiple daily struggles as aresult of the behaviours their childdisplayed. The pervasive nature of autismmade constant demands on parents psycho-logical and physical well-being, creatingimbalances within relationships and familyfunctioning. Receiving a diagnosis helpedthese parents accept autism as a part of theirchild, enabling them to work together andsupport each other (Samios et al., 2012).

Limited support or advice around copingstrategies was offered at diagnosis. Familieswere often dependent on individual familycircumstances. Given the well-being benefitsof the psychological coping strategiesdescribed in the introduction, parents andtheir children could potentially benefit fromeducation and psychological interventionsdelivered by EPs post-diagnosis to promotesuccessful coping earlier. To enhance familyrelationships Flippin and Crais (2011) advo-cated fathers involvement earlier in parent-

child interventions. This is supported by theintense, all-consuming mother-child inter-actions reported that could impact on rela-tionships, leaving a mother with limited timefor maintaining relations with her partner(Sawyer et al., 2010; Walsh & OLeary, 2013).Evaluation of any such interventions shouldconsider an array of child and family meas-ures (Karst & van Hecke, 2012) which mightinclude parental well-being, marital relation-ships and family functioning.

Fathers in particular suffered increasedparenting stress from externalised behav-iours such as aggressive outbursts exhibitedby their children (Davis & Carter, 2008).Such outbursts occurred typically as a conse-quence of misperception of social situationsand poor emotional regulation (Pouw et al.,2013). Attendance at a mainstream schoolsometimes resulted in challenging behav-iours at home. Parents, schools and EPs needto work together to teach adolescents withautism strategies for emotional regulationand when possible interpret social interac-tions. Ideally, everyone working within aschool requires autism training, knowledgeof the individual child and an understandingthat in some instances a child may appear tobe coping in school when they are in factexperiencing difficulties. Parents are bestplaced to provide information of idiosyn-cratic behaviours and successful strategies;therefore open communication should beencouraged. Banach et al. (2010) suggested aschool-based group to provide a collaborativeforum for parents to find support andempowerment. EPs may also be instrumentalin offering solutions to schools and parentswith regards communicating and managingappropriately differentiated homework tasks.

To support the best outcomes for youngpeople with ASD, collaborative working andclear communication between families, EPs,schools and other support services is impera-tive. Professionals involved in the diagnosisof autism, schools and wider society need tobecome more mindful and empathetic ofthe difficulties faced by parents of adoles-cents with autism.

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This study has highlighted the particularimportance that school issues and thinkingabout the future have for parents, which hasimportant ramifications for the way thatthose involved with the family work withthem. The equivocal nature of the findingsfrom previous studies regarding the impactof raising a child with special educationalneeds on the family unit is important toexplore. This study offers support to findingsfrom other UK based studies that parents ofchildren with ASD do struggle to maintainpersonal relationships as a result of the timeand energy invested in supporting the child.The inclusion of fathers here is also impor-tant as previous work has typically focused onthe views of the mother. Knowing that whilstthere are similar stresses experienced by bothparents, the fact that fathers articulate somedifferences in their experiences is an impor-tant consideration for those working with thefamily. These issues could be targetedusefully, for example, by EPs to aid familyfunctioning and help plan for the future.

Address for correspondenceNicola MountTeaching Assistant,Heanor Gate Science College,Kirkley Drive, Heanor,Derbyshire, DE75 7RA.Email: nmount@heanorgate.derbyshire.sch.ukorlimedale.gmn@gmail.com

Gayle DillonSenior Lecturer,School of Social Sciences,Nottingham Trent University,Burton Street, Nottingham, NG1 4BU.Email: gayle.dillon@ntu.ac.uk

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