Parenting an adult child with autism spectrum disorder (ASD) who has intermittent outbursts of aggression may expose parents and other family members to potential physical threat and psychological distress including chronic hypervigilance. However, no known studies have explored the ‘lived’ experience of parenting an adult child diagnosed with ASD who displays aggression. Therefore, this phenomenological study sought both negative and positive subjective interpretations of three parents of adult sons with ASD (aged between 20 and 30) displaying intermittent and unpredictable aggressive behaviours. Data was collected through semi-structured interviews, transcribed and analysed using interpretative phenomenological analysis (IPA). One main theme emerged: Complex parental distress and growth overarching six subordinate themes. Themes describe the psychological and emotional unpredictability that was relentless in daily life whilst parenting a child diagnosed with ASD complicated by outbursts of aggressive behaviour. Anticipation of potentially traumatic events was expressed as constant. The powerful emotions of frustration, empathy, pity and an intense need to protect the child with ASD who displays aggression were in contrast with felt stigma and societal criticism. In time, they developed their own pragmatic survival strategies for functioning as a family that could accommodate each family member’s needs as much as possible. Psychological well-being became a balance of striving for personal psychological growth despite the constancy of anticipatory traumatic events. Future research and implications are discussed.
Aggression within the family unit can be a devastating experience for all family members (Mount and Dillon 2014). Contemporary discourse around domestic violence focuses on partner violence and violence by parents upon children (Bakanic 2015; Winstok 2015). However, the impact of aggressive behaviours directed at parents from their children is rarely discussed. Indeed, rather than the diagnosis itself, aggressive behaviour associated with ASD is the greater source of distress for parents, often resulting in property damage as well as injury to self and others (Lecavalier et al. 2006). Correspondingly, aggression is the main cause for concern expressed by teaching staff of children with ASD (Kanne and Mazurek 2011; Lecavalier et al. 2006). Whilst the effects of aggression on parents has been widely evaluated in the domain of younger children and adolescents with ASD (e.g. Carroll et al. 2014; Mount and Dillon 2014), the impact of aggression on a parent of an older/adult child with ASD has been largely neglected.
Recent prevalence estimates show that ASD affects 115,400 Australians (0.5% of the population; Australian Bureau of Statistics 2012). However, high functioning individuals with ASD are often not diagnosed until later in childhood or early adolescence with diagnosis frequently arising from the child’s incapacity to function within the expected societal norms (Howlin & Asgharian, 1999).
Unusual preoccupations and repetitive behaviour in conjunction with impairments in communication skills and social interaction are key characteristics of ASD (Carroll et al. 2014). Additional behaviours including self-injury and aggression can complicate integration into their school or community for children with ASD, placing additional stress on their families (Carroll et al. 2014; Doehring et al., 2014). Though parents have reported feeling shock and grief on receiving a diagnosis of ASD for their child, receiving a diagnosis has also provided a sense of relief for some bringing acceptance and understanding of their child’s particular difficulties (Mount and Dillon 2014).
Aggressive behaviour occurs more frequently in individuals with ASD compared with other developmental disabilities or the general population (Matson and Rivet 2008). Self-injurious behaviours, aggression towards others and the destruction of property are the most common types of aggression displayed by individuals with ASD (Kanne and Mazurek 2011; Mandell 2008). The literature investigating this phenomenon has become more prolific in recent years as researchers try to identify the link between ASD and aggression, particularly what contributes to and predicts such behaviours (e.g. Carroll et al. 2014; Matson and Nebel-Schwalm 2007).
There are certain characteristic features of ASD that make some individuals more vulnerable to aggressive behaviours. For example, whilst in typically developing children good empathic and social cognitive skills are associated with less aggressive behaviours (Mayberry and Espelage 2006), theory of mind or cognitive aspects of empathy are less developed in children with ASD (Pouw et al. 2013). This is frequently accompanied by poor emotional regulation and reduced social cognition, an inability to interpret the social world, seeing others as inconsistent and unpredictable (Pouw et al. 2013). Additionally, difficulties with verbal and nonverbal communication are a source of frustration that can lead to aggressive outbursts (Dominick et al. 2007). Conversely, although environmental conditions can cause variability across a range of behaviours, aggression and destructive behaviours are less likely from environmental events (McGill et al. 2001).
Parenting a child with ASD and aggression is associated with distinctive stressors (Schieve et al. 2007). Specifically, parents have described facing unremitting daily challenges and feeling as though they were operating in a state of perpetual crisis (DeGrace 2004; White et al. 2011). Furthermore, parents are known to adjust their own lives to accommodate their child’s behaviour as a result of not being able to facilitate behavioural modifications within their child (DeGrace 2004; Hoogsteen and Woodgate 2013; White et al. 2011). Some families create inflexible routines to revolve around the needs of the child with ASD in order for the family to function more efficiently. However, the reliance on rigid structure to accommodate the child with ASD and manage behavioural outbursts negatively impacts relationships within the family, the extended family and with friends (DeGrace 2004).
Aggressive behaviours by people with ASD also impact access to support services, education and participation in everyday activities (Hodgetts et al. 2013). Indeed, challenging behaviour is the principal reason families need and request respite and residential placements for their child. Paradoxically, aggressive behaviour is also the main reason access to these services is refused (Hodgetts et al. 2013).
The severity and regularity of aggressive outbursts in children with ASD influence parental stress (Pozo et al. 2014). Similarly, parents come to perceive their circumstances as less controllable, predictable or meaningful, in comparison to parents of typically developing children (Schieve et al. 2007). Feelings of social isolation, stigmatisation and parental stress occur more strongly for these parents than any other parent-child relational factor (Gray 2002; Schieve et al. 2007). These findings are particularly meaningful when bearing in mind that families caring for a child with ASD without aggression are already at higher risk for depression, marital breakdown, decreased social support and increased stress when compared with other disabilities or the general population.
More recently, a qualitative study by Mount and Dillon (2014) found that physical assaults, throwing items and refusing to cooperate were some of the behaviours that had notable effects on relationships within the family and with ‘self’. Additionally, guilt, regret, frustration and fatigue were themes that emerged from the endless physical and psychological demands placed on them. These parents found themselves constantly looking for ways to make things better. For the children, school attendance caused increasing frustration from feeling misunderstood in social scenarios and having difficulties with peer and teacher relationships, to homework expectations.
Systematic exposure to aggression meets the criteria of what constitutes a primary traumatic stressor and can lead to symptoms of posttraumatic stress (American Psychiatric Association 2013). Furthermore, indirect exposure to a traumatic event can lead to emotional contamination. For example, apart from any personal risk, parents of children diagnosed with ASD who display aggression can vicariously experience their child’s pain, confusion and distress (Lecavalier et al. 2006; Schieve et al. 2007; White et al. 2011). This phenomenon sits within the literature on compassion fatigue, secondary traumatic stress and vicarious trauma (Figley 1995). Conversely, traumatic events can lead to positive effects as is evidenced in many areas of research concerning psychological stress and trauma (Helgeson et al. 2006; Lynne McCormack and McKellar 2015; McCormack and Thomson 2017). Tedeschi and Calhoun (2004) suggested that certain features of traumatic life events may, at times, shield against detrimental outcomes. Furthermore, posttraumatic growth, positive changes that follow adversity, includes positive changes in self-perception, relationships and worldview (McCormack and Joseph 2013). Posttraumatic growth does not erase distress but instead can coexist with distress (Helgeson et al. 2006).
Continuous psychological well-being is largely seen to manifest over time (Joseph 2011). Therefore, the narratives of parents of adult children can offer an insight into their individual perceptions of distress and growth as they have lived their experience over a number of decades. This qualitative study seeks to explore the subjective interpretation of a lifetime of caring for a child with ASD who displays aggression. It explores both positive and negative interpretations of parents tasked with caring for adult children diagnosed with ASD who regularly display outbursts of aggression that is challenging to manage.
Participants for this study comprise three parents of three young adults with ASD: Darleen, mother of Adam (aged 21); John, stepfather of Sam (aged 30); and Sally, mother of David (aged 25). These parents meet the criteria for the study, i.e. a child in the age range of 20–30 diagnosed with ASD and displaying aggressive behaviour. All names are de-identified. Each participant’s child had varying levels of intellectual and autistic presentations but all had acted aggressively towards others, damaged property and engaged in self-injurious behaviour. At the time of the study, Darleen and Sally had completed high school in year 10 and John had a university degree. Sally and John worked full time and Darleen worked part-time as part of a management team caring for her son.
University human ethics clearance was secured prior to recruitment. Recruitment occurred through ASD support group websites, on Facebook and on the research group Family Interaction and Neurodevelopmental Disorder Lab (FIND Lab) Facebook page. This provided a snowballing effect of recruitment through acquaintances, friends and family. Potential participants were emailed details of the study through the Study Information Letter which also outlined the aim and purpose, methodology and privacy considerations of the study. It also informed participants that semi-structured interviews would be recorded using a digital voice recorder as part of data collection. It also reinforced that participants could withdraw from the study at any time until the time of submission.
Interested participants responded directly to the researcher attaching the signed consent form. Following signed consent, four interviews were conducted and recorded at a time and place suitable to the participant. In line with interpretative phenomenological analysis (IPA) protocol, the interview schedule was emailed to participants the day prior to the interview to allow reflection to begin on the phenomenon being investigated (Smith, 1996). Finally, three interviews were transcribed as the fourth participant withdrew her data from the study stating that she no longer felt her situation met the research criteria.
The semi-structured interview was constructed in line with the protocols of IPA (Smith et al. 2009). Open-ended questions reduced the risk of researcher bias allowing the participant’s subjective interpretations to direct the interview. Prompts occurred only when the interview deviated from the phenomenon under investigation. Participants were encouraged to talk expansively using a narrative and evaluative style of interpretation of the phenomenon. All participants met IPA criteria for homogeneity, that is, they each had a son aged from 20 to 30 (inclusive) who had been diagnosed with an ASD and who had behaved aggressively in terms of injury to others, self-injury and property damage.
Collection of data through digitally recorded interviews and transcription and analysis of the data adhered to the rigour of IPA protocols inclusive of the double hermeneutic framework of reiterative sense making. Through a funnelling technique, narrowing down to the subject of interest, both positive and negative interpretations of the participants’ experiences and sense making reflected on seeking and receiving a diagnosis of ASD for their child, their child’s aggressive behaviour, societal perceptions and how they perceived their future would be impacted (Smith et al. 2009). All interviews were conducted and transcribed by the first author and lasted between 42:16 and 105:04 (min:s). The first two authors independently analysed each data set before engaging in rigorous debate over potential biases and final themes. The third author provided a credibility check of the final resultant themes.
IPA provides a set of flexible guidelines that allows the researcher to examine unique life experience through semi-structured interviews within a defined social context (Smith et al. 2009). Each transcript was analysed independently following the four-stage process as outlined by Smith et al. (2009). First, each transcript was read several times and initial thoughts noted in the left hand margin. Second, researchers examined the semantic content identifying specific themes noting them in the right-hand margin. Third, analysis of these exploratory notes led to the identification of emergent themes. Finally, by comparing and contrasting the emergent themes across all transcripts, the researchers were able to identify convergent and divergent connections.
Qualitative research that seeks subjective interpretations of a phenomenon is not concerned with external reality nor saturation but rich thematic data that is either convergent (across all transcripts) or divergent (within one transcript). In IPA, rigour is dependent on adherence to methodological steps (Denzin and Lincoln 2011; Smith et al. 2011). Trustworthiness, verification, credibility and dependability occurred throughout by using a well-documented continual process of verification (Guba and Lincoln 1981, 1982, 1989; Morse 2011). Strict adherence to the IPA process provided validity checks resulting in consistency within the analysis.
One superordinate theme Complex parental distress and growth overarches the subordinate themes Anxious legitimacy, Russian roulette, The missing conduit, Perceived prejudice, Pragmatic control and Unfolding a new worldview. The theme, Anxious legitimacy, highlights the emotional cacophony of receiving a diagnosis for their child, whilst Russian roulette describes the heightened senses needed to manage this child and the world’s intolerance, knowing that indiscriminate physical and emotional threat is unpredictable and never far away. Juxtaposed with this reality is their distress in witnessing their child’s inabilities to read social cues or comprehend expectations of them. The missing conduit addresses the realisation that their child is not safe in the world and is a threat to self, others and property. Awareness mirrors the powerful emotions of frustration, empathy, pity and an intense need to protect this child. Perceived prejudice defines the rejection felt from negative societal responses to both parent and child and the daily battles of defending their worth in an ever-shrinking supportive world. They redefine their needs to create a unique world for their child, allowing their own lives to re-emerge; they embrace Pragmatic control. Balancing acceptance and personal psychological growth is a challenge constantly undermined by the anticipation of the next traumatic event. Unfolding a new worldview observes how the dyad of psychological distress and growth continues to unravel as these participants anxiously wonder what the world will hold for their child after the parent has died.
This theme highlights the emotional entanglement that emerges from receiving a diagnosis of ASD. Fear, grief, protectiveness, hope and relief are common emotional responses for these participants. John describes the experience as knowing ‘that once that Sam was diagnosed … it wouldn’t get easier but ... to get services … was going to be a bit easier’.
A diagnosis that explained a child’s behaviour and made sense legitimised a different way of being in this world for families living with ASD:
That this behaviour that Sam (has) … wasn’t right and to have that … proven … is … quite relieving.
An immediate sense of isolation and fear occurs, knowing that their child’s world is different and that life for all of the individuals in the family unit is different:
I found that I couldn’t talk to Steve (husband) about it .... we were quite scared … about what his (son) future was going to be.
An increased sense of responsibility was also immediate. Juxtaposed with grief of lost dreams is an overwhelming need to protect this child.
It takes away your dreams of what you imagine your child is going to do … you realise that that’s not going to happen … you also want to be very protective of him.
Getting a diagnosis of ASD triggers both positive and negative emotions. A feeling of disharmony ensues devastation, knowing their life is forever changed, and immense relief, knowing it’s not their fault and perceiving help is on its way:
So as harrowing as it was … the relief that you’re not silly … and that—hopefully—this is the beginning of some extra help—was of comfort.
A burden of being ‘misunderstood’ and socially neglected within the wider community and those in authority, whilst simultaneously having to protect others from the unexpected physical outburst of their child, emerged in these interviews. Similarly, there is heightened alertness to the possibility of self-injury and potential property damage by their child, which further impacts on their growing sense of isolation. Darleen explains how her son ‘gets really over excited and comes off the top of this very happy over excitement and into this aggression’. Understanding that their child views the world differently does not protect them from the unknowable, of which event will lead to aggression. For the span of their parenting life, aggression is part of his entire life. The complexity is never resolved and invariably these participants feel caught off guard as new and unexpected levels of aggression erupt:
It was the first time anyone had seen him with sort of murderous intent. Adam can be aggressive—this was a different sort of aggression … attacking people … property … massive, putting his hand through windows … trying to eat glass.
There is an awareness in each of the participants that their child and the world are likely to collide violently at any time. Threat for the child with ASD is a potential constant particularly when inflexibility in adherence to rules clashes with others who are not rule bound:
I can hear them [a large group of angry boys], I can see them—and Sam can hear them and see them as well—but because Sam has stopped them from doing something they shouldn’t be doing [by reporting them]… [but he is] not really sensing the danger.
Every experience adjusts their renewed sense of vigilance:
You’re aware more of the way a normal situation can turn into something really bad really quickly … you always expect the unexpected.
With age, the risk of injury increases. Puberty delivers a new set of fears that challenge parents to balance their child needs with their own self-protection. Most challenging is distancing a sense of personal affront from their child’s actions whilst remaining committed to the role of primary caretaker:
He did the biting when he was younger. … [but then] around thirteen … he was getting stronger—and … he wants to break my arm.
The Missing Conduit
The participants muse on the scope of emotional responses that overextend them. Despite feeling pushed to their limits, unexpected empathy emerges from recognising the greater effort required of their child to connect with this world:
To see him just not get it time and time again … everybody has their limit and the way things are for Sam—sometimes will push him and me to our limits … he has it harder than I do—because [although] I have to understand his frustration and understand why he’s getting things wrong—he has to live it.
Through these powerful attachments—a dance of empathy, pity and frustration intrinsically intertwined with a desire to protect:
I’ve never had the breadth of emotions for anybody as I have for Sam. … I’ve never wanted to protect someone and feel sorry for someone and yet want to throttle them all at the same time—all the time! He’s incredibly frustrating but then … I think ‘how must it be for him looking out onto the world’ .… the confusion and the frustration of him knowing that he doesn’t get it really—really brings that aggression out of him.
The participants’ experience of loving and living with a child with ASD who is aggressive is constantly fluid. Reflecting on the world’s expectations for acceptance within society, there is grief, helplessness and a constant realignment of triggers and responses. Ultimately, they perceive the conduit is blocked and acceptance barred for their child:
It’s made me realise that you can have looks and you can be intelligent … attributes that are deemed important in our western world and still—not get accepted …. the world works very well within certain parameters—socially … but if you don’t fit 100% into those parameters—the world is very cruel.
Periods of social isolation and of being misunderstood and minimalised by friends, family and government systems and the paradox of how society’s requirement for their child to integrate increase the risk of exclusion and stigmatisation for these participants. Isolated and disconnected by association with their child, their worldview becomes one of disappointment and disgust in the narrowness and disregard of those not personally visited by ASD:
You see how other people—who don’t understand … who don’t get him … how he can then make them feel and it’s amazing how frustrated people can get.
There is the sense that a controlled anger hovers close to the surface from experiencing perceived injustice and lack of empathic insight. Expectations of support and programs for integrative learning from those who should know better within education leave them feeling bitter and negated:
He spent 15 years there [at school] … um—but he learned nothing … all he did was behave badly … and everyone suffers.
As they witness their child corralled into unattainable conformity within the structure of the education system and society, associated stigma pushes the parents out of society. Consequently, they appear to have developed emotional resilience developed through fighting the constant fights to be ‘heard’ and have their child’s needs met in any meaningful way:
You have to … prove how high you can jump …. they’re [government departments] still not thinking the right way.
Aggression is the ever-present threat in family life as the child grows. Unprepared for a career of care and for managing aggressive physical confrontations, ‘self’ disappears into moment by moment problem solving that forces an abdication of a life that once was and heightens loss. As their child grows, the participants’ world shrinks:
He’d just have a meltdown and he’d lash out and kick … so—um—one of us had to leave work, which we weren’t prepared for …. firstly, I left work to care for him …. I couldn’t take him anywhere—he was so aggressive … he would just demand that I buy [things] and he would punch me—‘BUY IT!’
Increasingly, as their child grows into a man, aggressive outbursts in public diminish confidence in their ability to contain their child’s public displays of aggression. Ultimately the feel trapped and forced to take the only safe course of action by giving into their child’s demands. This stark contrast to an earlier life stage, when the child was physically controllable, leaves them feeling defeated. Theirs is a world of constant emotional overwhelm, with disappointment, aloneness and feeling unbelieved:
I don’t tell people about it … I really don’t tell them how bad it is or my fears or anything like that.
Money is the ever-elusive power barterer over fear of future. When able to fund a new, functional and insular world for their child with ASD, participants can escape from an existence of overwhelming isolation and stigma. After years of treading water, the opportunity to create a small, safe world for an adult child with ASD can re-open the parent’s world:
Well I manage this team … so I’m—I’m back now … I’ve got my own life … he’s my son but it’s this job I do … there’s light at the end of the tunnel like everyone else—I sign off …. there’s an end to it … if it was only ever that—if you never stopped … it would be ‘oh god I can’t do this’.
Through an increase in pragmatic control over emotional and physical safety, a sense of confidence and capacity is restored. The ability to manage a life lived with the threat of aggression and fear facilitates connectedness:
When I haven’t seen him I look forward to seeing him …. it could have gone another way … if you were um solely reliant on welfare … you are destined unfortunately for a life of being a second-class citizen.
Self-created respite becomes the tool that gives rise to calm contemplation and appreciation:
He teaches you a lot—about patience I guess …. sometimes by the end of my three days [with him] I’m thinking—‘my goodness’ but by the time it’s time to come back—I’m looking forward to it.
Unfolding a New Worldview
This theme highlights the swings and roundabouts of meaning making for these participants. Even within the interview, there are moments spent revisiting earlier reflections as they continue to ponder their child’s ‘future’. The knowledge that their child will most likely out-live them intrudes often. A sense of despair and mourning for a world they will no longer be able to control unfolds. A lingering cloud of mistrust, stigma and judgement hangs over as participants tentatively divulge their true feelings:
You do try to set it all up so that it will continue if you’re not there …. you kind of spend a lot of time practicing for your death …. there is nothing … not anywhere for people who present with challenging behaviours to go in their retirement years.
Without practical and emotional support, they fear the future and the burden likely to be vested on other children. In moments of despair, they see few positive outcomes:
I’ve said [to my daughter] ‘I don’t want him to be a burden for you, I don’t want you to have my life’.
Positive change is also noted and personal identities reframe a consolidation of past and future that offers comfort and reassurance. A mother reflects on her own renewed strength and gratitude since the burden of fulltime care moved into a shared care arrangement:
It’s a very great privilege to be able to help somebody lead an inclusive life.
These participants describe a cloud of an invisible disability as the barrier to society’s empathic acceptance of their children. This insight provides the opportunity for less disappointment and more pragmatism:
Society only has a certain amount of patience … at times it would be easier if Sam actually presented with a physical disability.
Though devastated at their child’s social deficits, gratitude for their own communication strengths encourages empathetic growth:
I feel so lucky that … I do understand … when people talk and communicate—I get all of that and … I have that as maybe a strength of mine … and when I see Sam not have that, I feel terrible for him.
These quiet lessons of gratitude and appreciation emerge through watching their child struggle to achieve accomplishments that are without effort for them:
My appreciation of goals when they’re reached has changed … I see Sam achieve goals and it blows me away … so when I do achieve them … I don’t take that for granted.
A re-evaluation of what is important in their future is strengthening offering opportunities to consider successes in their own lives:
I think knowing Sam will always keep me grounded …. [I] celebrate the victories—not just with Sam, but the victories you have for yourself.
Simultaneously, there is acceptance of a life journey of service:
I know Sam will … always have a greater reliance on his mother and me … when he’s … 45 and when he’s 50 … that’s just the way it’s going to be.
And a pragmatic and calm pride in self-reliance born of reduced faith in the human species’ ability to be compassionate and tolerant for very long:
More often than not … he’s there giving it his best crack … Sam can only do what he can do—and I can only do what I can do.
Redefining the earlier private narrative of hopelessness and fear, they engage with alternate and positive interpretations of purpose and meaning:
I feel relieved that he’s not more higher functioning …. that fear of them being out in the world and not being protected … it’s a crippling fear … and um—because he’s not high functioning … we can keep him safe.
Similarly, they muse on various care pathways for the future. Pragmatic about the inevitable shift in the burden of care as they age, there is recognition that irrespective of their fears, the future will look after itself:
We’re going to get old … he’s never been in a group home or anything, I don’t want to leave um—him as a responsibility for Maryanne (sister). And I’ve spoken to her about that and I’ve said ‘I don’t want him to be a burden for you. I don’t want you to have my life’. Um—‘all I expect from you is for him—to be somewhere and for you to make sure he’s looked after and celebrated on birthdays and things like that’.
This study emphasises the complex and difficult life-path of parenting a child diagnosed with ASD who displays aggression to self, others and property. Further, it highlights the ever-present vigilance that brings a sense of anticipatory trauma to living with this dual presentation that is not evident in the literature on ASD. Living in a heightened state of negative expectation impacts these participants relational interactions and choices for the survival of all family members. Uniquely in this study, participants spoke of redefining their lives with increments of hope. Psychological growth was acknowledged through expressions of privilege and gratitude, purpose and meaning, empathy and compassion. Conscious, positive reappraisal of their lives particularly emerged as their child aged and they no longer needed to combat the system allowing them to redefine the former distress of stigma, loss and a heavy burden of fear for the future.
The subordinate theme Anxious legitimacy highlights the emotional confusion in the early days that surrounded a diagnosis of ASD. It also brought a feeling of ambivalence mixed with relief. Though their child’s ‘differences’ brought a perspective of understanding and meaning to their lives as parents and their child’s functioning, being defined through those ‘differences’ did not acknowledge the complete individual and their future potential.
The dual phenomenon of ASD and aggression is captured in the theme, Russian roulette. Within this theme, the anguish of the hidden disability combined with the anticipatory trauma of never knowing what their child will do next brought suspicion towards a society ready to judge from these participants. Fear of stigma, judgement and the anticipation of the unexpected from their child created a constant state of intensity that was palpable and unrelenting in their interview reflections. Similar to earlier research, these parents spoke of the distress of relentless daily challenges and experiencing feeling caught in a state of permanent crisis (DeGrace 2004; White et al. 2011). Like a game of Russian roulette, unwittingly, a treating practitioner or a stranger on the street could trigger an aggressive outburst in their child. Frustration, distress, hopelessness and helplessness within themselves were juxtaposed with perceptions that they were expected to immediately and predictably keep society safe from their child whilst keeping their child safe in society. Ultimate humiliation became a daily part of interactions with those outside the family as they sensed negative judgement for doing this demanding job.
Furthermore, a state of permanent alertness had notable effects on relationships within the family and with self. Without the opportunity to retreat from their responsibilities to both child and society, frustration, fatigue and other symptoms of burnout were constant. Systemic exposure to this dual phenomenon brought emotional and physical threat in these participants meeting the criteria of what constitutes a primary traumatic stressor leaving them vulnerable to traumatic distress, acute and chronic (American Psychiatric Association 2013). Although ASD brings many challenges, the additional unpredictable aggressive threat negates the opportunity to live and mix within society as most parents can expect to do. For these participants, aggression was a constant threat that acted to isolate these families with judgement, invalidation and blame.
The missing conduit articulates coming to terms with the reality of their child’s world. These participants came to realise that their child was not purposefully challenging theirs’ and other’s authority but incapable of understanding what is required of them. They described their child’s fight or flight response to both positive and negative emotional triggers. As a result, acceptance and understanding helped them recreate their world as one that could prioritise their child’s need for a calm and predictable world. By changing their worldview, a renewed empathy emerged for their child caught in a world vastly different from their own perceptions of it.
The subordinate theme perceived prejudice highlights immense feelings of being misunderstood and misjudged. In the early years, the unique and complex needs of these children required a creative and sometimes unorthodox set of responses from these parents. The participants saw these techniques as appropriate and necessary, sourced from strength and resilience. They described the pain and frustration felt in response to open misunderstanding and criticism of their unique approaches to managing their child’s behaviours. Being misunderstood, being seen as weak or incompetent or as responding to their own feelings of embarrassment as opposed to effecting a pragmatic protective measure for the safety of themselves, their child and the general public were felt as stigmatising. This increased their burden of responsibility for their child’s aggressive behaviour. Similarly, an increase in stigmatisation was perceived from therapists who defined many of their strategies as inappropriate, resulting in a disputed interpretation of cause and effect. However, the conduit for these families and the rest of the world invariably needed to be sourced from therapists setting participants at odds with many clinicians and medical professionals. Rather than receiving the positive impact that these struggling families desperately sought, they felt further alienation and stigmatisation.
Pragmatic control reflects an increase in self-worth over the years allowing self-reliance to emerge out of the despair of their child’s adolescent years. Overshadowing the preadolescent years a paucity of knowledge and understanding by teaching staff in relation to their child’s aggressive and unpredictable outbursts brought additional demands and distress. Within the school environment, being misunderstood, misunderstanding information and social cues, having difficulties with peer and teacher relationships and homework expectations increased frustration and likely aggressive outbursts from the child with ASD; impacting on families (Mount and Dillon 2014). The participants of this study interpreted the experience of watching their son’s behaviour worsen as the school years proceeded, as evidence that their child was suffering from increased anxiety and frustration. The distress that resulted from vicarious exposure to their child’s distress, pain and confusion invoked feelings of helplessness consistent with experiences that may lead to secondary traumatic stress and escalate compassion fatigue (Figley 1995). These consistent findings (Mount and Dillon 2014; Simpson and Myles 1998) suggest that the current objective of integrating these children into the mainstream education system may not be the best way forward.
However, adolescence and school leaving brought relief as it freed them from having to negotiate a school system at odds with their child’s emotional and psychological needs or abilities. Similarly, as societal expectations of conformity and integration decreased, these participants reported that their distress lessened. This allowed for a calmer and more manageable way of being in a world where the oppression of stigma and fear of danger previously had been forced on them by systems intent on inclusion. Distinctively, the participants in this study found that unique and hope-filled individual initiatives replaced a loss of faith in ‘the system’ as their sons moved from adolescence into adulthood. The constant need to defend themselves against the stigma associated with having a child who behaves aggressively resulted in a strengthening of resilience and a calm acceptance of what is beyond their control. No longer suppressed by the criticism of non-evidenced support or the need to navigate an education system that they believed exacerbated their child’s difficulties, these participants took charge of their circumstances, permitting their lost self to re-emerge. Acceptance of unending distress and concern surrounding their adult child’s unpredictable and aggressive outbursts brought with it greater purpose, meaning, empathy and gratitude, all products of personal psychological growth that assisted well-being.
Unfolding a new world view contrasts fear for the future with positive growth out of the adversity of the past. When considering the benefits of positive growth, the study by Hoogsteen and Woodgate (2013) found that parents felt enriched and rewarded by the positive changes they enabled in their children evidencing positive growth in parents of children diagnosed with ASD. The participants in the current study expressed similar outcomes though the dual phenomenon further impacted their levels of distress. The addition of aggression and age of the adult children in the current study needs to be taken into account. Long-term, consistent and time-consuming efforts to facilitate incremental positive changes, particularly in terms of aggressive outbursts, complicated successes for these parents. Therefore, consideration of the distinction between ‘process’ and ‘outcome’ needs to be made (Helgeson et al. 2006). A meta-analysis which looked at ‘time since trauma’ as a moderator found that positive growth in the early stages of trauma may reflect a coping method rather than an outcome (Helgeson et al. 2006). In the current study, parents spoke of the domains of privilege and gratitude, purpose and meaning, empathy and compassion, all aspects of posttraumatic growth (McCormack et al. 2010). However, differently to other such research, this study was interested in participants that have been living in an anticipatory state of trauma as an intricate and ongoing part of their lives for two decades or more. As such, they are never posttrauma but living in a constant state of anticipation and traumatic risk. Ongoing trauma adds a new dimension to the investigation of growth. Future research could examine ‘time in trauma’ that might illuminate the differences between process and outcome and contribute to this growing body of knowledge (Helgeson et al. 2006; McCormack and Joseph 2013; McCormack and McKellar 2015).
As described by these participants, a societal shift from a position of judgement and blame, increasing stigma and isolation, to one of acceptance, would better assist these families. In particular, these participants described misconceptions within schools, health and society. First, they described how children with ASD and aggressive behaviours (1) do not function well in mainstream schools because of their aggression rather than their ASD, (2) have a unique way of understanding the world requiring unique responses and (3) that parents are uniquely positioned to advise professionals in devising specific strategies to manage and contain their child’s ASD and aggression towards self, parents and society. Plagued by ‘it’s not my fault’, being validated, believed and consulted as parents, has major implications for educational and health systems in their caring of children with complex disabilities, particularly those that are aggressive.
Undesirable emotional and negative psychological outcomes that occur whilst parenting a child with a diagnosis of ASD who is aggressive have been well-documented (Ludlow et al. 2012; McStay et al. 2014; Mount and Dillon 2014; Pozo et al. 2014; White et al. 2011). However, feelings of stigmatisation and social isolation predict parental stress more strongly than any other parent-child relational factor (Gray 2002; Gupta and Singhal 2005; Schieve et al. 2007). Importantly, this study highlights that parenting a child with ASD and aggression is likely to create anticipatory trauma contributing further to psychological distress and increasing parental risk of chronic psychopathology. This added stress is particularly meaningful when considering that families caring for a child with ASD without aggression are already at higher risk for depression, marital breakdown, decreased social support and increased stress when compared with other disabilities or the general population (Estes et al. 2009; Gabovitch and Curtin 2009; Mount and Dillon 2014; Schieve et al. 2007).
This study illuminates the risk to chronic psychopathology from the distress of anticipatory trauma but also the ability for those exposed to this dual phenomenon to experience psychological growth for combatting societies’ poor understanding and persistent attempts to push these ‘square blocks through round holes’. Ever adaptive, these participants sought strengths within themselves. Previous studies reported that when unable to facilitate behavioural changes within their child, participants reported making changes in themselves and their own lives to accommodate their child’s behaviour (DeGrace 2004; Hoogsteen and Woodgate 2013; White et al. 2011). Clinicians working with such families may increase support by harnessing individual strategies for psychological well-being to offset the distress of the living experience of anticipatory and present trauma as opposed to posttrauma.
Recruitment for this study was extraordinarily challenging as most families had disengaged from services and support groups due to experienced stigma, criticism and lack of validating support. Many potential participants may have associated a university study with authority and lack of support. This limited the size of the participant group. Had we been able to recruit a mix of fathers, mothers and step-parents, a broader interpretation of this experience may have emerged. This is supported by the findings of previous research (Matson and Nebel-Schwalm 2007) in which difficult and detrimental outcomes from government departments have left many disconnected from these recruitment avenues and they have no desire to re-open themselves to potential judgement and resultant distress.
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The authors would like to thank the participants for their generous contribution to this research project.
No funding was required or given for this study.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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Swaab, L., McCormack, L. & Campbell, L.E. Distress and Psychological Growth in Parenting an Adult Child with Autism Spectrum Disorder and Aggression. Adv Neurodev Disord 1, 260–270 (2017). https://doi.org/10.1007/s41252-017-0033-5
- Autism spectrum disorder
- Psychological distress
- Psychological growth