Resilience in autism: Research and practice prospects

He is a happy man. He just had his 85th birthday a few months ago. He lives independently in a small town. He travels by himself to many places, including foreign countries. He plays golf regularly. He drives. He worked as a teller in a bank. He has a degree in French and has joined multiple clubs in college (including singing in an a cappella choir). He has friends. He is Donald, ‘case 1’ in Leo Kanner’s classic paper about autistic kids (Donvan & Zucker, 2016).

Many autistic people live fruitful lives, as do many neurotypical people. Daily living can be a challenge for many though, owing to communication and social barriers, co-occurring physical and mental health disorders (Davignon, Qian, Massolo, & Croen, 2018), independent living and job challenges (Howlin & Magiati, 2017), and society’s stigma and misunderstanding of autism. Premature mortality due to a variety of reasons, including suicide, is more often seen in autistic people than in the general population (Hirvikoski et al., 2016). Yet, the developmental trajectories of autistic individuals vary substantially: some experience consistent social and daily living challenges, some gain substantial skills over time (Szatmari et al., 2015), some show autistic characteristics more prominently when they are school age or older than when they were toddlers (Ozonoff et al., 2018), and some grow up with markedly attenuated autistic behaviours (i.e. they may no longer meet the ‘symptom count’ criteria or even the ‘current functional impairment’ criteria for a clinical autism spectrum disorder diagnosis) and generally function well (Orinstein et al., 2015). Some people struggle daily, and some are resilient despite the many challenges they experience.

Resilience has been conceptualized in the child development literature as a process of interactive adaptation in which the child has been exposed to ‘adversity’ but manages to demonstrate a relatively good outcome despite the risk experiences (Rutter, 2012). Although initially considered as an individual characteristic of the child, it is now clearly understood that resilience involves both the capacity of the individual and the contextual, social-ecological processes that facilitate coping in culturally meaningful ways (Ungar, 2015). Over the past few decades, research in this broad field has identified the most meaningful factors contributing to resilience in children and adolescents: (1) effective caregiving and parenting; (2) close relationships with capable adults; (3) close friends and romantic partners; (4) intelligence and problem-solving skills; (5) self-control, emotion regulation and planfulness; (6) motivation to succeed; (7) self-efficacy; (8) faith, hope and belief that life has meaning; (9) effective schools; and (10) effective neighbourhoods and collective efficacy (Masten, 2015).

Many of these factors could be readily applied to understand resilience in autistic people. It is therefore interesting to note how little autism research has focused on resilience in autistic people (though there is much more on resilience in parents of autistic children). Little work has explicitly applied our general knowledge about resilience in individual development to study the well-being of people on the autism spectrum (Szatmari, 2018). This may be due to the conventional view that studies of resilience must involve the exposure to explicit and external adversities such as deprivation, trauma and physical illness, and autism as an inborn neurodevelopmental condition does not seem to fit with this presumption. We argue that this narrow perspective is an oversight and represents a missed opportunity.

Autism per se is not an adversity. But why shouldn’t the challenges in daily living that autistic people experience from early in life be considered as challenging, ‘risk experiences’? Possibly these long-standing challenges can be viewed as ‘adversities’, and the processes that autistic people enlist to overcome them reflect resilience. Through this lens, the accumulated knowledge about resilience in general provides the richest evidence base and conceptual framework to understand how to improve the well-being of autistic individuals and families – by shifting from solely an individual-based approach to paying more attention to a social-ecological perspective. Many of the challenging experiences autistic individuals face relate to disabilities in developmental, social-communication, behavioural and health domains, but many of them also stem from poor person-environment fit and inadequate contextual accommodation, so the disabilities do not come from the individual per se but from the fit between the individual and the contexts (Lai & Baron-Cohen, 2015). The autism intervention literature is characterized by approaches heavily targeting the autistic individuals’ development and skills, but less on concurrently adjusting the contexts in order to enhance the person-environment fit. The resilience literature may help us accelerate ongoing and future paradigm shifts in research directions and in more effective interventions and support.

Resilience is a dynamic process (Rutter, 2012). Studying and applying it requires a lifespan perspective that considers key transition periods including that from youth into adulthood (Leebens & Williamson, 2017). This emerging topic in our field (Nicholas et al., 2017) will benefit from conceptual and empirical inputs from the resilience literature. Resilient outcomes do not mean only ‘doing OK’ or reflect a lack of a psychiatric diagnosis but indicate a desired and meaningful life status. This definition corresponds to current conceptions and emerging empirical research on meaningful outcomes defined by autistic individuals (Georgiades & Kasari, 2018; McConachie et al., 2018). A general finding in the resilience literature is that individual traits influence individual outcomes, but less so than systemic factors such as family, school or community, especially when the ecology fails to facilitate the expression of strengths of the child (Ungar, 2015). Hence, for autistic people, environmental accommodation and enhancing person-environment fit (as has long been considered central to occupational therapy and education) are equally, if not more, influential than solely focusing on skill-building. This idea fits well with the latest empirical findings in early intervention in which models that enhance caregiver-child synchronization result in robust positive outcomes (French & Kennedy, 2017; Green & Garg, 2018). This idea also corresponds to the recent paradigm change of vocational support from focusing on supported employment and job skills building to establishing community resources, family support, workplace capacity building and policy (Nicholas, Mitchell, Dudley, Clarke, & Zulla, 2018).

The resilience literature also emphasizes the processes children engage in to access their human capital (e.g. individual cognitive strengths), social capital (e.g. relationships), financial/institutional capital (e.g. supportive social and educational programmes), natural capital (e.g. land and water) and built capital (e.g. safe streets, public transit, recreational facilities, housing and schools) (Ungar, 2015). Ensuring access to autistic individuals’ capital has already been included in some approaches that leverage autistic strengths (e.g. TEACCH) (Virues-Ortega, Julio, & Pastor-Barriuso, 2013) and facilitate key elements of relations such as parent-child synchronization and joint engagement (e.g. caregiver-mediated interventions) (French & Kennedy, 2017; Green & Garg, 2018). Focusing on resilience also may stimulate new interventions that build on individual strengths (Mottron, 2017) (also see http://dart.ed.ac.uk/intervention-neurodiversity/), such as leveraging special interests for learning in schools (Wood, 2019). Resilience approaches highlight the importance of access to resources for the family and autistic people alike, which requires both research into effective implementation of intervention and support programmes that show efficacy, and also continuing advocacy and policy support.

Insights from how resilience can be applied to clinical practice are also informative. For example, the social-ecological, multi-dimensional framework used to assess resilience that considers the level of adversity (for autistic people and family this would be obstacles associated with disabilities and inadequate person-environment fit), individual and contextual processes of resilience, and developmental and cultural dimensions (Ungar, 2015), is well suited for a resilience-fostering formulation and support planning for autistic individuals and families. Concepts like ‘stress inoculation’ (i.e. individuals practice responding to low doses of potential threats), ‘steeling effects’ of manageable exposures to adversity and successful coping experiences, ‘planning’ tendency (i.e. a style of self-reflection to assess what has worked or not, a sense of agency to deal with challenges and self-confidence in being able to do so) and ‘turning points’ (Masten, 2015; Rutter, 2013) can be leveraged creatively in supporting the adaptation and development of autistic individuals in different life stages. These concepts will need to guide new clinical research to provide the evidence base for such formulations.

It may be time for autism research and practice to give a social-ecological framework more weight and to make use of the accumulated knowledge of resilience in human development, in order to improve the well-being of autistic individuals and families. Interestingly, some lessons may have been taught already from Donald’s lived experiences:

The most unusual thing about Donald’s experience at Forest High in the early fifties was how his fellow students, their families, and the school community treated him – this eccentric teenager who had disappeared from school for so many years. They simply let him be. (Donvan & Zucker, 2016, p. 62)