Childhood adversity, resilience, and autism: a critical review of the literature

Abstract

The long-term, negative physical and mental health effects of childhood adversity are well-documented in the literature, as are the mitigating effects of resilience factors. However, for those on the autism spectrum, these phenomena are relatively unstudied and not well-understood. Articulating the concept of mental health as a function of childhood adversity, resilience, and autistic identity, provides a foundation from which to conduct research and provide clinical mental health supports to individuals on the autism spectrum. Research on adversity and resilience in this population must consider neurodiversity and foreground the perspectives of the autism and autistic communities in research design, study implementation, and findings dissemination.

Points of interest

• Children on the autism spectrum experience more adversity and more mental health challenges than their non-autistic peers, a relationship that is not well-understood by researchers or clinicians. Autistic adults can provide insight into their experience of adversity and the potential influence of it on their mental health.

• It is unclear what factors contribute to protecting autistic children from the potential negative effects of adversity. This protection is known as resilience and may be developed differently in children on the autism spectrum.

• Childhood adversity and resilience are important considerations in developing mental health supports for individuals on the autism spectrum.

• Research and clinical practice can adopt a neurodiversity-affirming perspective to better meet the mental health needs of autistic individuals.

• Engaging the autistic community to provide their perspectives and experiences is vital to developing effective mental health strategies for those on the autism spectrum.

Keywords:

• Autism
• adversity
• resilience
• children
• mental health
• research
• neurodiversity

Introduction

The effects of childhood adversity on individuals in the general population is well-documented. There is a demonstrated correlation between adversity in childhood and poor mental and physical health outcomes in adulthood (Bright et al. 2016; Felitti et al. 1998; Hughes et al. 2017). There is also evidence that these outcomes can be mitigated by internal and external protective factors, which are developed in childhood — a phenomenon known as resilience (Bellis et al. 2018; Gartland et al. 2019; Herrman et al. 2011; Liu et al. 2020; Moore and Ramirez 2016). The role of resilience in promoting the wellbeing of children and adults who have faced adversity is important because some experts have noted that facilitating the development of resilience is an easier task than trying to avoid adversity (Avdagic et al. 2018). However, the influence of adversity and resilience on the health outcomes of children on the autism spectrum has not been as thoroughly studied and is not well-understood. Children diagnosed on the autism spectrum experience more adversity in childhood than their non-autistic peers (Berg et al. 2016; Rigles 2017), yet the impact of these experiences is relatively unstudied, as is the concept of resilience. Epidemiological studies that analysed the relationship between resilience and adversity in children on the autism spectrum have had inconsistent results (e.g. McCrimmon, Matchullis, and Altomare 2016; Rigles 2017; Schneider, VanOrmer, and Zlomke 2019), pointing to a need for further research that explores how resilience is experienced by children on the autism spectrum.

The experiences of mental health in individuals on the autism spectrum are complex. The literature on the prevalence of mental health diagnoses has shown varied results and has highlighted the diversity of these experiences (Lai et al. 2019). While there is evidence indicating that children on the autism spectrum experience mental concerns at a high rate (CDC 2020; Joshi et al. 2010; Madden et al. 2017; Soke et al. 2018; Wijnhoven et al. 2019), there is a paucity of literature on the factors that influence the development of mental health challenges in this population. For example, epidemiological studies have only provided insight into the higher rates of adversity faced by children on the autism spectrum and have not described the long-term influence of these phenomena on mental health (e.g. Berg et al. 2016; Rigles 2017).

Furthermore, there is a tendency among researchers to identify mental health disorders as co-morbid to autism (e.g. Joshi et al. 2010; Madden et al. 2017; Soke et al. 2018), implying that autism is a disorder that occurs alongside other mental health diagnoses. The perspective that autism is a separate, independent disorder to be treated does not account for the possible influence that being autistic has on one’s mental health. Understanding autism through a neurodiversity lens, that is, as a neurological difference with unique strengths, rather than a disorder characterized by deficits (Baron-Cohen 2017; Silberman 2015), allows us to conceptualize autism as an identity that may influence how one experiences adversity and resilience, and the subsequent impact on mental health. The purpose of this critical literature review is to discuss the mental health outcomes of children on the autism spectrum, conceptualized as a function of their experiences of adversity, resilience, and autistic identity. Their unique experiences of these phenomena and the potential influence on mental health must be considered when determining appropriate and effective mental health supports for both autistic children and adults. Implications for future research are also discussed.

Literature review process

This critical literature review was undertaken with the purpose of identifying the current literature on the phenomena of adversity and resilience among children on the autism spectrum and how those experiences related to their immediate and long-term mental health. The objective of a critical literature review is to evaluate the published research, and to offer some analysis and synthesis of this research to develop and promote new ideas (Grant and Booth 2009). In reviewing the available research, it became clear that there was minimal research on these topics, and that the existing research highlighted a pathologizing view of autism, rather than a neurodiversity-affirming perspective.

Typically, critical literature reviews are conducted without formally outlining a systematic search process, and information is drawn from a variety of sources (Grant and Booth 2009). For this critical review, I searched multiple databases (e.g. Discover, Google Scholar) for a variety of search terms related to the topic (e.g. adversity, adverse childhood experiences, resilience, autism, mental health), and utilized articles published since 2009, unless they were seminal works (e.g. Felitti et al. 1998). Additionally, I retrieved and reviewed articles cited in the literature found through database searches. Articles were eliminated from the review if they were evaluated as irrelevant to the topic (e.g. research on family resilience rather than resilience developed from protective factors against adversity).

Adversity

In 1998, Felitti and colleagues published a ground-breaking study in which they demonstrated the link between adversity, or adverse childhood experiences (ACES), and poor physical and mental health outcomes in adulthood. Subsequently, many researchers have studied this relationship, in a variety of contexts and populations. A Google search revealed how ubiquitous the research on adversity and health has become. A search of Google Scholar for articles on ACEs in the last 20 years showed 327,000 results, suggesting it is a topic that is well-studied in the general population. However, there are significantly fewer studies exploring the effects of adversity on children on the autism spectrum. From the available research, it is apparent that individuals on the autism spectrum experience adversity at a higher rate than their neurotypical (non-autistic) peers (Berg et al. 2016; Rigles 2017), which suggests that adversity negatively impacts the mental health of children on the autism spectrum.

Traumatic effects of adversity

In the current literature on adversity in childhood, researchers used various terminology to describe these experiences, including trauma/traumatic events (APA 2008; Kerns, Newschaffer, and Berkowitz 2015; Kisiel et al. 2009; Mehtar and Mukaddes 2011; Taylor and Gotham 2016; Van der Kolk 2005), adverse childhood experiences (Bellis et al. 2018; Felitti et al. 1998; Hughes et al. 2017; Moore and Ramirez 2016; Rigles 2017; Thakur et al. 2017), adversity (Berg et al. 2016; Bright et al. 2016), and stressors (Wood and Gadow 2010). Regardless of the chosen terminology, these researchers have similarly described childhood experiences of sexual, physical, or psychological abuse (Felitti et al. 1998; Hughes et al. 2017; Kerns, Newschaffer, and Berkowitz 2015; Mehtar and Mukaddes 2011; Moore and Ramirez 2016; Van der Kolk 2005), domestic or community violence (Berg et al. 2016; Felitti et al. 1998; Hughes et al. 2017; Kerns, Newschaffer, and Berkowitz 2015; Mehtar and Mukaddes 2011; Moore and Ramirez 2016; Taylor and Gotham 2016; Thakur et al. 2017; Van der Kolk 2005), parental death or injury (Berg et al. 2016; Hughes et al. 2017; Taylor and Gotham 2016), parental mental illness or addiction (Berg et al. 2016; Felitti et al. 1998; Moore and Ramirez 2016; Taylor and Gotham 2016; Thakur et al. 2017), bullying/victimization by peers (Hughes et al. 2017; Taylor and Gotham 2016; Wood and Gadow 2010), parental divorce or separation (Berg et al. 2016; Hughes et al. 2017; Taylor and Gotham 2016), poverty (Berg et al. 2016; Hughes et al. 2017; Moore and Ramirez 2016), and natural disasters (Kerns, Newschaffer, and Berkowitz 2015; Mehtar and Mukaddes 2011; Van der Kolk 2005). According to the American Psychological Association (APA 2008) ‘a traumatic event is one that threatens injury, death, or the physical integrity of self or others and also causes horror, terror, or helplessness at the time it occurs’ (2).

Trauma can be acute, happening only once, or can occur repeatedly over time (APA 2008; Kerns, Newschaffer, and Berkowitz 2015). The severity of trauma can vary, but there is evidence that the effects of prolonged trauma are more destructive than the effects of a single traumatic event (APA 2008). As such, any of the above examples could be traumatizing to an individual, with the perceptions and impacts of such events varying from person to person (APA 2008; Kerns, Newschaffer, and Berkowitz 2015). Given this variability, I use the more general term adversity to describe experiences that have the potential to be traumatizing, except in instances that require the above terminology for clarity.

Adversity among children on the autism spectrum

The evidence for the assertion that children on the autism spectrum are exposed to adversity at greater rates is found in the 2011–2012 National Survey of Children’s Health (NSCH), in which researchers gathered parent reports of children’s health from participants across the United States (U.S.); and, when compared with the general population, parents reported that their children on the autism spectrum had experienced more ACEs (Berg et al. 2016; Rigles 2017). ACEs that were most commonly experienced by children on the autism spectrum were related to family distress, including financial issues, divorce, death of a parent, and parental mental health conditions (Berg et al. 2016; Rigles 2017). Berg et al. (2016) also identified a significantly higher incidence of neighbourhood violence for children on the autism spectrum.

In addition to the high prevalence of ACEs in children on the autism spectrum, there is also the potential for them to experience adversity in the form of victimization by their peers (Hoover and Romero 2019; Pfeffer 2016; Rowley et al. 2012). Parents reported high rates of physical assault and bullying directed toward their children diagnosed with autism (Pfeffer 2016), and children on the autism spectrum, aged 8-14, self-reported teasing and bullying as the most common experiences of adversity in their lives (Hoover and Romero 2019). Furthermore, the authors of one study found that children on the autism spectrum in inclusive education settings experienced more bullying than those who attended specialized sites (Rowley et al. 2012). While these findings are not definitive, they are concerning given that Iinclusive education is a right granted to all students on the autism spectrum by the United Nations’ Convention on the Rights of Persons with Disabilities (2006) and, in 2017, 58% of U.S. students diagnosed on the autism spectrum attended inclusive education classes at least 40% of the time, with 39.7% of students attending inclusive classes 80% of their day or more (U.S. Department of Education U.S. Department of Education and National Center for Education Statistics 2019). This means that almost half of autistic students in the U.S. are potentially at risk of being victims of bullying at school. Most concerning about this is that children on the autism spectrum were likely to experience more than one instance of victimization in their lifetimes (Pfeffer 2016), which is known to have more damaging effects than experiencing only one adverse or traumatic event (APA 2008).

Evidence that children on the autism spectrum face more adversity than their neurotypical peers compels us to understand how these stressors impact their wellbeing. While the effects of adversity on children on the autism spectrum is unclear, we know from studies of neurotypical children that adversity is negatively correlated with both physical and mental health (Bellis et al. 2018; Bright et al. 2016; Rigles 2017). For example, adversity is correlated with childhood illnesses such as digestive problems, allergies, headaches, asthma, and reports of overall poor health (Bellis et al. 2018). Children with ACE scores of one or more are also significantly more likely to have a mental, physical, or developmental disorder, with higher ACE scores being associated with multiple disorders (Bright et al. 2016).

It is clear that adversity is associated with a lack of physical and mental wellbeing in children, with increased incidence being related to a greater number and severity of problematic outcomes (Bright et al. 2016). Given the significant exposure to adversity that many children on the autism spectrum experience, it is reasonable to conclude that adversity has a serious impact on the mental health of children on the autism spectrum; this, however, has not been studied. Instead, we look to the extensive literature on the presentation and prevalence on mental health disorders in children on the autism spectrum to inform our understanding of their experiences.

Experiences of mental health disorders diagnoses in children on the autism spectrum

The prevalence of mental health diagnoses in children and adolescents on the autism spectrum is alarmingly high (CDC 2020; Joshi et al. 2010; Madden et al. 2017; Soke et al. 2018). The relationship between mental health conditions and autism is complicated and varied, particularly across developmental stages (Ryan, Lai, and Weiss 2018; Soke et al. 2018; Vasa, Hagopian, and Kalb 2020). Additionally, mental health professionals have often ignored the relationship, underdiagnosing mental health conditions in children on the autism spectrum (Stadnick et al. 2017), which points to a need for a better understanding of the influence of adversity and resilience on the mental health of children on the autism spectrum.

Common mental health disorders conditions experienced by children on the autism spectrum

The most commonly occurring mental health conditions in children on the autism spectrum are attention disorders, anxiety disorders, depression, and behavioural disorders, which occur at higher rates than in neurotypical children (Joshi et al. 2010; Madden et al. 2017). For instance, children on the autism spectrum are 2.5 times more likely to experience depression than their peers (Madden et al. 2017). Especially troubling is that children on the autism spectrum with diagnosed anxiety self-reported high rates of depressive symptoms and suicidal ideation (Wijnhoven et al. 2019). It is also important to be aware of the variability in the presentation of mental health challenges as children age. Older children on the autism spectrum are more likely to be diagnosed with conditions such as anxiety, attention deficit hyperactivity disorder (ADHD), aggression, oppositional behaviours, and mood disorders; while younger children on the autism spectrum exhibit behaviour challenges, such as temper tantrums or sleep disturbances, and developmental disorders, such as language disorders (Soke et al. 2018). These developmental differences are also evidenced in parental reports of mental health crises among children and adolescents (Vasa, Hagopian, and Kalb 2020). In children under age 12, mental health crises were most often related to self-injurious behaviours, while in adolescents, physical and verbal aggression were the most common behaviours associated with a mental health crisis. Further, there is evidence that as children on the autism spectrum develop into adolescence, their needs shift from requiring behavioural supports to requiring mental health supports (Ryan, Lai, and Weiss 2018). Given the prevalence and complexities of mental health challenges in children on the autism spectrum, it is important to consider these confounding diagnoses when developing interventions and implementing supports.

Underdiagnosing of mental health disorders conditions in children on the autism spectrum

Despite the research evidence demonstrating the prevalence of mental health diagnoses disorders in children on the autism spectrum, mental health professionals seem to under-diagnose mental health conditions in children diagnosed with autism (Stadnick et al. 2017). For example, Stadnick et al. (2017) noted that while mental health diagnoses were higher among children on the autism spectrum, there was also incongruence between the prevalence rates that were reported by clinicians and the results they gathered using a diagnostic tool that relied on parent-report. The clinicians were not likely to diagnose any mental health conditions in children on the autism spectrum who met the criteria for a mental health diagnosis according to the diagnostic tool. Stadnick and colleagues suggested that this finding could be due, in part, to a phenomenon in which clinicians are prone to attribute symptomology solely to autism, once the child has that diagnosis. For example, ADHD is diagnosed more often in children who have not yet received a diagnosis of autism than those who have (Soke et al. 2018), and psychotropic medications are frequently prescribed to children on the autism spectrum, even when a corresponding diagnosis is not present (Madden et al. 2017). These examples demonstrate what Stadnick and colleagues referred to as ‘search satisficing’ (847), which is apt to occur in the absence of structured interviews in the diagnostic process (Jensen-Doss et al. 2014). The tendency of clinicians to under-diagnose mental health conditions in children on the autism spectrum is problematic; if these challenges are not identified, the underlying contextual contributors (such as adversity) cannot be addressed, potentially exacerbating the impact on the child’s mental health.

Current research has clearly indicated that children on the autism spectrum are more likely than their non-autistic peers to experience mental health conditions (CDC 2020; Joshi et al. 2010; Madden et al. 2017; Soke et al. 2018). Coupled with the understanding that experiences of adversity are also higher in this population (Berg et al. 2016; Rigles 2017), it is possible that mental health symptoms are related to their experiences of adversity in childhood. Furthermore, by understanding the effects of adversity on children on the autism spectrum, clinicians may be encouraged to address mental health challenges in this population, rather than attributing them solely to the autism diagnosis. When combined, these findings reinforce that understanding the potential effects of childhood experiences on mental health is imperative, and that clinicians and researchers need to consider these effects in developing and offering mental health supports to individuals on the autism spectrum.

Interaction of autism-related characteristics and adversity

Neurotypical children who are traumatized by adverse experiences may demonstrate a variety of symptoms that can direct mental health clinicians to recognize the presenting problem as trauma-based, and subsequently address their needs accordingly. For example, children may demonstrate anger, sleep disturbances, inability to concentrate, re-experiencing of the event, or dissociation (APA 2008; Kisiel et al. 2009). However, significantly less research exists regarding the presentation of trauma-related symptoms in children on the autism spectrum. The potential interaction between autistic characteristics and adversity (Im 2016; Kerns, Newschaffer, and Berkowitz 2015) may influence the presentation of trauma-related symptoms, such as an increase in autism-related behaviours (Kerns, Newschaffer, and Berkowitz 2015; Mehtar and Mukaddes 2011; Wood and Gadow 2010). This may mask the evidence that an event was traumatic, resulting in mental health professionals missing the opportunity to provide trauma supports to these children.

Children on the autism spectrum may experience adversity in unique ways

Some have argued that neurological differences in individuals on the autism spectrum cause them to experience adverse events differently, which may result in a person on the autism spectrum experiencing an event as more or less traumatic than would a neurotypical person (Im 2016; Kerns, Newschaffer, and Berkowitz 2015). The variability in the influence of adversity on individuals depends on how a person evaluates a potentially traumatic situation for threat, and their ability to cope with the emotions related to the event (Kerns, Newschaffer, and Berkowitz 2015). Kerns, Newschaffer, and Berkowitz (2015) argued that the neurological differences in individuals on the autism spectrum may prime them to perceive events as traumatic and confound their ability to cope, leading to a more significant impact. Additionally, experiences that result from autism may be highly stressful for children on the spectrum, such as overwhelming sensory experiences or anxiety in social situations (Wood and Gadow 2010). This means that children on the autism spectrum may experience negative effects of adversity that their neurotypical peers do not face, further impacting their mental health.

Despite the potential for experiencing adversity in unique ways, there is evidence that following a traumatic event, both children on the autism spectrum and non-autistic children present with similar symptoms. For example, children on the autism spectrum have demonstrated symptoms such as behaviour problems, including aggression and temper, following a traumatic event. Additionally, they may demonstrate post-traumatic stress disorder (PTSD) symptoms such as distractibility, sleep issues, agitation, and avoidance of social interactions (Mehtar and Mukaddes 2011; Thakur et al. 2017). These are similar to the symptoms noted earlier that are often exhibited by neurotypical children who have experienced a traumatizing event (APA 2008; Kisiel et al. 2009); however, these problems are also prevalent in children on the autism spectrum in general (Joshi et al. 2010; Madden et al. 2017; Soke et al. 2018). Additionally, there is the potential for adversity to increase autism-related behaviours. Wood and Gadow (2010) proposed a model of stress and anxiety for children on the autism spectrum wherein stressful events trigger anxiety, which results in an increase in repetitive behaviours, social avoidance, and behavioural challenges. These symptoms are similar to the differences in social communication and the exhibition of restricted, repetitive behaviours that are characteristic of autism (CDC 2020; NIMH 2015). Therefore, the appearance of such behaviours in a child on the autism spectrum may not raise red flags or may be dismissed as autism-related behaviour.

Anxiety, depression, and suicidal ideation in children on the autism spectrum

Despite the potentially confounding effects of the interaction between autism and adversity on the manifestation of trauma-related symptoms, there is a clear correlation between adversity and anxiety, depression, and suicidal behaviour in adolescents on the autism spectrum (Storch et al. 2013; Taylor and Gotham 2016; Wood and Gadow 2010). For example, Taylor and Gotham (2016) found that a single adverse event in childhood was correlated with the development of mood-related symptoms in adolescence. Notably, not every participant who experienced an adverse event developed symptoms, but when symptoms were present, participants also reported adversity in their histories (Taylor and Gotham 2016). Storch et al. (2013) found a similar relationship between PTSD, which indicates a history of traumatic events, and suicidal thoughts and behaviours in adolescents on the autism spectrum. Suicidal behaviours (i.e. thoughts, plans to attempt suicide, and previous attempts) are high in youth on the autism spectrum; Storch and colleagues found that both depression and PTSD were predictors of this type of behaviour while comorbid anxiety was not. However, Wijnhoven et al. (2019) found that just over one-third of participants aged 8-15, diagnosed with autism and anxiety, self-reported having thoughts of suicide. Together, the results of these studies suggest that when adversity leads to PTSD symptoms, depression, or anxiety, children and adolescents on the autism spectrum are at risk for suicide.

While the research base is limited, there appears to be a relationship between autism, adversity, and the presentation of trauma-related symptoms and mental health challenges in adolescents (Kerns, Newschaffer, and Berkowitz 2015; Mehtar and Mukaddes 2011; Storch et al. 2013; Taylor and Gotham 2016; Wood and Gadow 2010). When identifying mental health conditions and providing support to those on the autism spectrum, it is imperative to bear in mind the complexities of this relationship, to ensure that mental health needs are not dismissed as autism-related behaviours. Furthermore, the potential influence of adversity on the development of mental health challenges moves us toward deepening our understanding of the development of resilience.

Resilience

Resilience is the ability of a person to prevail over negative, or even tragic, life circumstances (APA n.d.; Herrman et al. 2011). The research literature on resilience is vast, and many definitions of the concept exist; however, there is a common theme of maintaining wellbeing in the face of adversity, and ‘bouncing back’ from difficult experiences (Avdagic et al. 2018, 5). Resilience mitigates the potential negative outcomes as the result of the interaction between experiences of adversity and the internal and external protective factors that guard an individual from the potential negative effects of the experience (Herrman et al. 2011). While these protective factors have been identified and studied in the general population, little is known about the role of these factors on resilience from adversity as experienced by children on the autism spectrum (Rigles 2017). A better understanding of the experience of resilience by children on the autism spectrum is necessary to foster protective factors in their lives.

Understanding this relationship is useful in developing supports for children at risk for experiencing high rates of adversity. For example, external protective factors can be added to a child’s environment with interventions that target their social supports (Avdagic et al. 2018). Furthermore, resilience can be built in children by facilitating the development of internal factors, such as regulating emotions, social skills, and self-esteem (Avdagic et al. 2018; Gartland et al. 2019; Rigles 2017).

Resilience in children on the autism spectrum

Unfortunately, it becomes more difficult to rely on this information to develop resilience in children on the autism spectrum, as the relationship between protective factors and the effects of adversity for this population is less clear, and some evidence is contradictory. McCrimmon, Matchullis, and Altomare (2016) found that children on the autism spectrum demonstrated resilience no differently from their neurotypical peers, with protective factors and risk factors for adversity occurring at the same rate in both groups. Conversely, Rigles (2017) found that children on the autism spectrum demonstrated less resilience than neurotypical children. Despite this finding, there was no evidence that having an autism diagnosis impacted the relationship between resilience and potential mental health issues, with the likelihood of better mental health being related to higher resilience (Rigles 2017). These studies are not fully comparable, as McCrimmon, Matchullis, and Altomare only included children with a diagnostic label of high functioning autism in their sample, while Rigles included participants with any of the autism diagnostic labels.

Despite these differences, the inconsistency in results indicates that further research is necessary to identify and describe resilience in children on the autism spectrum. Rigles (2017) concluded that children on the autism spectrum may experience resilience differently, and therefore it is not measurable by assessing for known internal factors. As such, the current data on the phenomenon in autistic children may not be accurate, as evidenced by their finding that resilience rates in these children did not decrease as adversity increased, as it does in samples of the general population. Thus, it is imperative that future research describe potential protective factors for children on the autism spectrum.

Autistic culture and resilience

Experts generally agree that the concept of wellbeing is influenced by cultural factors and may be identified differently for different individuals (Avdagic et al. 2018). Understanding autism within a neurodiversity framework, gives clinicians and researchers the opportunity to consider the culture of autism and the meaning of wellbeing to those on the spectrum. The epidemiological studies of resilience factors in children on the autism spectrum provide a neurotypical understanding of resilience factors in children diagnosed with autism. However, the cultural definition of resilience may be different than the interpretations presented in the current literature. As such, to adequately facilitate the development of resilience in children on the spectrum, we need to understand how autistic individuals conceptualize resilience and wellbeing.

Building resilience in children on the autism spectrum

Knowledge of how individuals on the autism spectrum experience resilience will guide interventions to either nurture existing internal factors or facilitate the implementation of appropriate external protective factors for children on the autism spectrum. Some researchers have already identified the need to develop protective factors in autistic children, by adapting interventions designed for neurotypical children. By explicitly teaching skills, such as positive self-talk, managing emotions, and problem-solving, Mackay, Shochet, and Orr (2017) found that autistic adolescents improved their self-confidence, social skills, ability to cope, and emotional regulation, all of which are known protective factors among non-autistic children (Gartland et al. 2019). Similarly, Guest and Ohrt (2018) successfully adapted child-centred play therapy to meet the needs of a five-year-old child on the autism spectrum who had experienced an early traumatic event. The child demonstrated some ability to therapeutically process his traumatic experience, as well as an improvement in impairments related to his autism (Guest and Ohrt 2018). Given a better understanding of the experience of resilience and key protective factors in individuals on the autism spectrum, similar interventions, targeting the development of these unique protective factors, may be adapted and provided to children and adolescents on the autism spectrum.

Considering neurodiversity: Autism as identity not pathology

How researchers and clinicians view an autism diagnosis is important in the development of mental health supports. The current health system pathologizes autistic characteristics, leading clinicians and researchers to focus on the treatment of autism (Baron-Cohen 2017; O’Dell et al. 2016; Ripamonti 2016). When autism is pathologized and viewed as a co-morbidity to other mental health diagnoses, clinicians and researchers focus on interventions that reduce autistic characteristics and make autistic individuals appear ‘more normal’ (Hodge 2013). In contrast, a more wholistic approach to mental health can be achieved by embracing a neurodiversity lens when conceptualizing mental health challenges in individuals on the autism spectrum.

Neurodiversity suggests that autism is not a disorder, disease or problem to be fixed; rather, it is a neurological difference that fosters distinct abilities (Baron-Cohen 2017; NSN n.d.; Silberman 2015). Baron-Cohen (2017) suggested that viewing autism through a neurodiversity lens is analogous to discussing handedness — being left-handed or right-handed is neither good nor bad, functional nor dysfunctional; it is simply a difference. Additionally, for those on the autism spectrum, symptoms resulting from traumatic experiences can manifest as an increase in autistic behaviours (Wood and Gadow 2010), which may mask the significance of traumatic experiences on autistic individuals. Rather than taking a pathologizing perspective and thus focusing on changing autistic behaviours, clinicians and researchers embracing neurodiversity can be attuned to the possible influence of childhood experiences on an autistic individual’s presenting behaviours.

Through a neurodiversity lens, autism is both a diagnosis and an identity, developed within a sociocultural context (O’Dell et al. 2016), and comes with unique strengths (Silberman 2015). Ripamonti (2016), paraphrasing Stanley Hauerwas, noted the sociocultural belief that those with disabilities are distressed by their disability. However, often the distress people with disabilities feel is due to being different, in this case autistic, within a society that does not value or accept difference (Hodge 2013). This sociocultural belief that disability is a problem that exists within a person is misplaced and leads to the pathologizing of autism and the need to fix that problem (Hodge 2013). Thus, embracing neurodiversity invites neurotypical researchers, clinicians, and supporters to identify and provide supports that respect and integrate a person’s unique autistic traits into the process, rather than trying to change them.

Furthermore, by moving away from pathologizing autism to focusing on a person’s autistic identity, researchers and clinicians can explore the interaction of an autistic identity, childhood adversity, and the development of resilience on the mental health of individuals on the autism spectrum. From a neurodiversity perspective, autistic individuals are the experts of their own neurodivergent experiences and are best suited to interpret their experiences for a neurotypical audience (Silberman 2015). As such, neurotypical researchers and clinicians must rely on autistic individuals to make meaning of their own experiences of childhood adversity and resilience and provide us with their insights.

Implications for future research

To understand mental health as a function of an autistic individual’s childhood experiences of adversity and resilience, further research is necessary. However, to understand these phenomena through a neurodiversity lens, the research must be conducted accordingly. It is imperative to conduct research that has a positive impact on the community, and most importantly, includes the perspectives of members of the autism and autistic communities (ASAN n.d.; Chown et al. 2017; Pellicano 2014; Pellicano, Dinsmore, and Charman 2014; Pellicano and Stears 2011). Given the principles underlying neurodiversity, which value autism as an identity and culture, research that honours neurodiversity must include the perspectives of autistic individuals, creating opportunities for them to have input on all aspects of the process (Milton and Bracher 2013; Milton et al. 2012; Pellicano 2014). Milton and Bracher (2013) have argued that autistic voices have been excluded from most autism-related research, which increases the power differentials between autistic and neurotypical groups and perpetuates misunderstandings and myths about autism. It is necessary for autism researchers to create opportunities for autistic individuals to share their insights and lived experiences in research (Milton and Bracher 2013), and for researchers to foreground their input (Pellicano 2014). Therefore, to study the interaction of autism, adversity, and resilience, it is vital that researchers go directly to those who have experienced these phenomena—autistic individuals. Research that describes and interprets the lived experiences of autistic individuals is necessary to further our understanding of how adversity, autism, and resilience influence mental health outcomes. Furthermore, most research is predominantly rooted in the biases and agendas of neurotypical researchers and may not be in the best interests of the autism or autistic communities (Milton and Bracher 2013). Therefore, research that engages the autistic community for their insights on the topic of mental health is to be collaborative, including members of the autistic community as partners in the planning, designing, and implementing of research studies, as well as in dissemination and knowledge translation. This is sometimes achieved through participatory action research or other methods of engaging the autistic community (ASAN n.d.; Chown et al. 2017; Milton and Bracher 2013; Pellicano, Dinsmore, and Charman 2014; Pellicano and Stears 2011). Collaboration and engagement with the autistic community decreases the likelihood that the knowledge gathered from autistic participants about their experiences and their mental health is filtered through a neurotypical (dominant) lens, and misrepresented, and/or misinterpreted (Milton and Bracher 2013; Pellicano 2014). This is important, as neurotypical researchers are apt to favour their dominant perceptions, despite contradictory perspectives from those in the autism and autistic communities. For example, Pellicano, Dinsmore, and Charman (2014) studied the perceived engagement of the autism community in research, gathering perspectives from autistic participants, their families, and researchers. While researchers expressed satisfaction with their level of engagement of the autism community, community members saw their own involvement as minimal and often frustrating (Pellicano, Dinsmore, and Charman 2014). Additionally, all the researchers surveyed indicated that autistic participants should not be partners in the research process (Pellicano, Dinsmore, and Charman 2014). These findings illustrate a power differential and the lack of alignment between autistic and neurotypical discourses. It is important that the research into the mental health experiences of autistic individuals not perpetuate these imbalances and that researchers strive to serve the community by aligning their objectives and methods accordingly.

Collaborative research reduces limitations

Some researchers have suggested that autistic participants are unreliable at self-reporting their experiences, internal psychological states, or impacts of stress (Mehtar and Mukaddes 2011; Robinson 2018; Wood and Gadow 2010). Proponents of the use of participatory or emancipatory methodologies in autism-related research, have identified that there are, indeed, issues related to these methodologies; however, engaging participatory methods does not affect the validity of results (Pellicano 2014). Therefore, researchers can adapt as needed, even viewing these issues not ‘as limitations but … different ways of thinking’ (Chown et al. 2017, 723). Despite the suggestion that autistic participants may be unreliable, researchers have successfully included autistic participants in studies on many topics, including trauma and trauma therapy. For example, autistic youth demonstrated the ability to accurately self-report their experiences and feelings in a qualitative study (Cage, Bird, and Pellicano 2016), autistic adolescents reported on the effectiveness of a resilience program (Mackay, Shochet, and Orr 2017), and an autistic adult reported the effects of childhood bullying as part of a therapeutic group (Robinson 2018). Robinson (2018) noted that the researcher is responsible for ensuring that participants can fully participate in qualitative research. When the researcher considered the case study participant’s unique way of perceiving the world, the participant successfully shared his experiences and insights.

To fully understand how mental health is shaped by adversity and resilience in children on the autism spectrum, it is imperative that we examine the lived experiences of autistic individuals. It is necessary to engage the autistic community both as partners, and as key decision-makers in how the research is conducted. The phrase nothing about us without us, has been embraced by autistic advocates and implies that any discussions, research, policies, or practices related to autism must include autistic voices (ASAN 2019; Chown et al. 2017). Engaging the autistic community both as participants and as partner researchers is a key component to ethical autism-related research (Chown et al. 2017; Milton and Bracher 2013; Pellicano 2014; Pellicano, Dinsmore, and Charman 2014; Pellicano and Stears 2011) and will help to prevent the perpetuation of potentially harmful discourses about autism and autistic people, as well as help to prevent autistic meaning from being translated through a neurotypical perspective (Milton 2014; Milton and Bracher 2013; Pellicano 2014).

Conclusions

Research exploring the unique experiences of children on the autism spectrum related to adversity and resilience is scant. However, given the known influence of adversity on health outcomes in the general population, and the evidence for mitigating these outcomes through the development of resilience, along with the existing research on the rates of adversity and the prevalence of mental health diagnoses in children on the autism spectrum, it is reasonable to conclude that mental health is influenced by adversity and resilience among autistic individuals. Furthermore, by viewing autism as part of an individual’s identity, rather than a pathology to be treated, we can focus on mental health as a function of the interaction between autism, adversity, and resilience, rather than as a co-occurring disorder. Further research is needed to learn, directly from autistic individuals, about the relationships between childhood adversity, resilience, mental health, and autistic identity; and to understand the wider implications of providing mental health supports to children and adults on the autism spectrum. It is imperative that researchers employ the insights and opinions of autistic individuals as both participants and partner researchers, to ensure the findings are relevant and congruent with autistic experiences.

Acknowledgements

I would like to thank Dr. Gwen Rempel for her mentorship and guidance throughout the writing process, the Autism Research Centre, Edmonton and Autism Edmonton and the Athabasca University Graduate Student Research Fund for their funding support.

Disclosure statement

No potential conflict of interest was reported by the author.