Remediating Deficits or Increasing Strengths in Autism Spectrum Disorder Research: a Content Analysis
There has been a substantial increase in autism spectrum disorder (ASD) research over the last decade. An important advancement in this research has been in the study of well-being in people with ASD. The purpose of the current study was to examine the deficit and strength foci of well-being research in the field. One thousand one hundred and fifty-four articles were randomly selected across five major ASD journals over an 11-year period and were coded for a focus on well-being, perspective (deficits, strengths, or mixed), intervention or non-intervention study, topic area, and methodology. Approximately 37% (n = 431) of articles focused on well-being of people with ASD. Half of these studies had a deficits perspective (50.3%), 11% had a strengths perspective, while the rest were mixed (i.e. both deficits- and strengths-focused). Roughly 41% of well-being articles were intervention studies. Approximately 58% of strengths- and mixed-focused articles included a focus on a strength construct (e.g. positive affect, self-determination). The current study provides a foundation for future strengths-focused work, which is essential to our understanding of well-being and positive functioning. Findings highlight trends with respect to the focus on strengths in ASD research, which may have important implications on positive conceptualizations of ASD and future strengths-focused research and practice.
KeywordsAutism spectrum disorder Strengths Positive psychology Well-being
Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by severe and pervasive difficulties with communication and social interaction, in addition to repetitive and stereotyped patterns of behaviours or interests (American Psychiatric Association 2013). Approximately 1 in 68 youth are thought to have ASD with a male to female ratio of 4:1 (Centers for Disease Control 2013). There has been an increase in ASD research over the last decade, across a range of fields, from underlying biological factors to systemic variables (Pellicano et al. 2014). One of the most important research areas has been in ways to improve the well-being of people with ASD. Well-being has been described as a multi-dimensional construct that captures the presence of positive emotions, the absence of negative emotions, positive functioning, fulfillment, and optimal experience (Diener 2009; Ryan and Deci 2001). It is considered a dynamic process that involves possessing the psychological, social, and physical resources to meet psychological, social and physical challenges (Dodge et al. 2012). According to the Centers for Disease Control (2014), well-being has been defined as “the presence of positive emotions and moods (e.g. contentment, happiness), the absence of negative emotions (e.g. depression, anxiety), satisfaction with life, fulfillment and positive functioning”. Researchers have conceptualized well-being through strengths (e.g. developing vocational skills), deficits (e.g. reducing anxiety), or a mixed approach of both (e.g. reducing depression while also teaching adaptive coping skills).
Much of the literature appears to focus on deficits alone—whether it be about the characteristics of ASD or the targets of studied interventions. For instance, systematic reviews have documented interventions that focus on social (White et al. 2007), mental health (Lang et al. 2010), behavioural (Howlin et al. 2009) and cognitive (Spreckley and Boyd 2009) problems often found in this population. It is important to examine whether and how the literature is moving beyond a deficits-focused view of ASD to further understand the positive aspects of well-being in individuals with this diagnosis. Similarly, it is critical to understand how strengths are conceptualized in ASD research in order to guide future research and intervention foci.
A discourse on strengths-focused research has emerged in the closely aligned field of intellectual disability (ID), which may provide a framework with which to study strengths in ASD. Many prominent authors in the ID field have emphasized that a study of deficits should be balanced with a study of strengths (Carter 2013; Dykens 2006; Wehmeyer and Shogren 2014). In 2006, Shogren et al. conducted a content analysis of the ID literature to determine the kinds of positively oriented constructs being measured in strengths- and deficits-focused articles over 30 years. They identified a general increasing trend over time in the rate of studies with a strengths-based perspective and positive psychology constructs as a main focus and a related decrease in deficits and mixed perspectives. Approximately 22% of articles from the earlier years (1975–1984) were strengths-focused, compared to 50% of articles in later years (1995–2004). Within strengths and mixed articles, a specific focus on strength constructs increased from 27% in early studies to 63% in later articles. To date, no systematic reviews or content analyses exist on how well-being approaches are being conceptualized in the ASD field.
Emerging examples of strengths-focused ASD research certainly exist. Studies have highlighted cognitive strengths of youth and adults with ASD on tests of fluid intelligence, in contrast to previous assumptions of expertise being restricted to simple, low-level cognitive tasks (e.g. rote memory, object manipulation tasks; Dawson et al. 2007). When asked, parents of youth with ASD are readily able to comment on their children’s strengths in areas that vary across cognitive abilities, skills and hobbies (Carter et al. 2015). Positive gains of having a child with ASD have been documented, including parental (e.g. appreciation and celebration of the child’s accomplishments), family (e.g. family closeness, opportunities for family members to participate in advocacy roles) and societal benefits (e.g. learning about diversity and differences; King et al. 2012). Strengths-focused approaches to assessment and interventions supporting individuals with ASD, which focus on adding quality to one’s life rather than solely focusing on eliminating some difficulty, continue to surface throughout the literature (e.g. Campbell and Tincani 2011; Rausa et al. 2015). Still, authors have called for additional work on positive psychology and strengths-focused work in ASD (McCrimmon and Montgomery 2014).
There are a number of constructs from the positive psychology literature that can be used to document and extend existing strengths-focused studies. Positive psychology focuses on the positive aspects of well-being and has been defined as “the conditions and processes that contribute to the flourishing or optimal functioning of people, groups, and institutions” (Gable and Haidt 2005, p. 104). The positive psychology movement represents a shift in understanding well-being by focusing on how strengths, resilience and thriving complement what we know about pathology, suffering, and disorder (Seligman 2002; Seligman et al. 2005) in order to understand “the full spectrum of the human experience” (Gable and Haidt 2005, p.105). Positive psychology is focused on positive emotions (e.g. joy), character strengths (positively oriented personality characteristics or traits associated with psychological well-being e.g. zest, leadership, self-regulation; Peterson and Seligman 2004), and positive institutions, communities and systems (e.g. positive youth development organizations; Seligman and Csikszentrnihalyi 2000). Self-determination exists as an important subfield of positive psychology that is particularly relevant to the pursuit of well-being in people with developmental disabilities. It is defined as a “…dispositional characteristic manifested as acting as the causal agent in one’s life. Self-determined people (i.e. causal agents) act in service to freely chosen goals. Self-determined actions function to enable a person to be the causal agent is his or her life” (Shogren et al. 2015, p. 258) and concerns individuals’ autonomy and competence related to one’s own life, including making choices and achieving goals and aspirations (Ryan and Deci 2001).
The purpose of the current study was to conduct a content analysis of the ASD literature on well-being and of associated strengths and positive psychology constructs within studies published in ASD journals, over an 11-year period. We categorized articles in the well-being literature as either strengths-, mixed-, or deficits-focused. For articles with a strengths or mixed perspective, we coded whether specific strength constructs were a main focus. In line with Shogren et al.’s (2006) findings, we expected to find an increase in strengths-focused articles and an increase in specific strength constructs over time. We also explored whether intervention studies differed from non-intervention studies in terms of relative focus on strengths and deficits, given the importance of interventions in relation to meaningful well-being outcomes.
Five high-calibre and reputable ASD journals were selected for our review: Autism: International Journal of Research and Practice (AIJRP), Research in Autism Spectrum Disorders (RASD), Journal of Autism and Developmental Disorders (JADD), Focus on Autism and Other Developmental Disabilities (FOCUS), and Autism Research (AR). These five journals were selected because of the explicit focus on ASD, thus maximizing the likelihood of selecting articles in which ASD was the population under study.
In each of these journals, we selected one quarter of articles from 2004 to 2014 using an online random number generator to determine which articles to select (http://www.stattrek.com/statistics/random-number-generator.aspx). To enhance generalizability, the random selection of articles was stratified by issue to ensure sampling occurred at approximately 25% across each publication year (ranging from 25 to 33% of articles given rounding error). Across all five journals, we reviewed 1154 articles across 308 issues (AIJRP: 12.0%, n = 138; RASD: 21.6%, n = 249; JADD: 50.4%, n = 582; FOCUS: 7.5%, n = 87; AR: 8.5%, n = 98). Two of the journals began publishing after 2004: Research in Autism Spectrum Disorders and Autism Research, which started in 2007 and 2008, respectively.
Empirical studies, literature reviews, and program descriptions were included, while editorials, opinion papers, book reviews and position statements were excluded. Only articles focused on individuals with ASD were included (not those which focused on family, others providing support, or the service system).
The presence of positive emotions and moods (e.g. contentment, happiness), the absence of negative emotions (e.g. depression, anxiety), satisfaction with life, fulfillment and positive functioning. In simple terms, well-being can be described as judging life positively and feeling good. For public health purposes, physical well-being (e.g. feeling very healthy and full of energy) is also viewed as critical to overall well-being. Researchers from different disciplines have examined different aspects of well-being that include the following: Physical well-being, Economic well-being, Social well-being, Development and activity, Emotional well-being, Psychological well-being, Life satisfaction, Domain specific satisfaction, Engaging activities and work (CDC 2013).
Studies that focused on well-being were further examined, based on a coding template adapted from Shogren et al. (2006). The perspective (strengths, deficits or mixed) of each article was rated according to Shogren et al.’s (2006) definitions. Articles were coded as having a strengths perspective if they were about “locating and developing personal and social resources and adaptive tendencies so that the person can be assisted in making more effective use of them” (Super 1955, p. 5 as cited in Shogren et al. 2006, p. 340), included positively oriented terminology and focused on enhancing the potential of individuals with ASD, a positive quality, characteristic or skill, or were about promoting valued life outcomes (Shogren et al. 2006, p. 343). Articles were coded as having a deficits perspective if they were about “quantifying deficits in a given aptitude or ability and developing strategies to remediate this lack of aptitude or ability” (Shogren et al. 2006, p. 340) and included studies that focused on addressing something that was missing, wrong, required remediation or fixing, or focused on a specific limitation or deficit of individuals with ASD. Articles coded as having a mixed perspective included both a “strengths and deficit orientation, typically by describing and focusing on a deficit in a particular ability or aptitude, but also discussing how other skills could be built upon to address the limited ability or aptitude” (Shogren et al. 2006, p. 340). Strengths and mixed perspective articles were subsequently coded for a primary focus on 15 strength constructs often found in the positive psychology field, including elements of self-determined behaviour (Wehmeyer 2005) and character strengths (Peterson and Seligman 2004). See Appendix for the full list of coded constructs.
Articles were further characterized as intervention studies (Yes or No), for topic area (intellectual or cognitive functioning, social and/or communication, adaptive behaviour, restricted or repetitive behaviours or interests, motor functioning, challenging behaviours, sensory processing, mental or physical health, academic or vocational) and methodology (empirical studies, review articles, other; quantitative, qualitative, mixed methods).
Four coders (two clinical psychology graduate students, one clinical research coordinator, one undergraduate honours student), all with clinical and/or research experience and interest in ASD and were all working in a clinical research lab focused on topics related to individuals with ASD and other neurodevelopmental conditions, were involved in the study. Coders were trained by and met regularly with the first author (postdoctoral fellow) to review and discuss the coding template and practice articles that were assigned between meetings over a 3-month period. Coders independently rated practice articles not included in the analysis and achieved excellent reliability (98.8%). Coders arrived at consensus on all disagreements during training. To ensure that reliability was maintained throughout coding, 20% of the articles (n = 230) were double-coded. Percent agreement ranged from 81.2 to 98.3% on coding constructs (M = 91.4%; SD = 5.9).
Strengths and mixed studies were then coded for whether any of the 15 strength constructs were a main focus (n = 214). Of these, 58% (n = 123) had a central focus on a strength construct. The following strength constructs were the focus across mixed and strengths-focused studies: Interpersonal Skills (29.9%; n = 64), Self-Determination (16.4%; n = 35), Personal Relationships (11.2%; n = 24), Motivation (1.9%; n = 4), Satisfaction (1.9%; n = 4), Sexuality/Sensual Pleasure (1.9%; n = 4), Humanity (1.9%; n = 4), Temperance (1.4%; n = 3), Wisdom and Knowledge (0.9%; n = 2), Coping (0.5%; n = 1) and Courage (0.5%; n = 1). The remaining four strength constructs were not covered in any of the strengths or mixed perspective articles.
Over a recent 11-year time period, 37.3% of randomly selected articles were focused on the well-being of individuals with ASD. Of these, the majority were deficits-focused, followed by mixed-focused, and a relatively small proportion were exclusively strengths-focused. Researchers, clinicians and advocates have called for a balance of deficits-based foci in research and practice that focuses on positive characteristics and promotes strengths (Armstrong 2010; O’Neil 2008). Combining both strengths and mixed studies revealed improvements over time and suggest that the field may indeed be changing. Social and communication topics were the most frequently occurring across well-being studies, which is to be expected given that social communication difficulties are a core feature of ASD. It is important to consider how the discourse around a particular topic may differ when situated in a strength or deficits perspective: Deficits-focused studies emphasized social or communication challenges, whereas strengths and mixed studies were often about social communication skill development (e.g. social skills interventions). Authors can continue to focus on topics central to understanding or promoting well-being in ASD, and at the same time find balance in how research is framed.
An interesting pattern emerged when comparing intervention to non-intervention studies. The majority of intervention studies had a mixed perspective, highlighting treatments aimed at decreasing deficits, while at the same time increasing strengths. For instance, cognitive-behavioural interventions have been used to successfully decrease emotion regulation difficulties and increase coping skills in youth with ASD (e.g. Sofronoff et al. 2007; Thomson et al. 2015). Likewise, behavioural interventions, such as functional communication training (Carr and Durand 1985), have been shown to decrease a host of maladaptive behaviours by increasing desired ones, reflecting a mixed focus. In this analysis, few intervention studies emerged as exclusively strengths-focused, and there is certainly a difference between programming that indirectly results in positive outcomes by reducing problems and programming that aims to improve positive outcomes explicitly. There is also the possibility that the benefits of implementing strengths-focused interventions may exceed those of interventions targeting deficits. In the non-ASD treatment field, typically developing adults with depression who were randomly assigned to a cognitive behavioural therapy (CBT) intervention matched to their strengths (capitalization approach) demonstrated better outcomes compared to those who received a CBT intervention comprised of strategies matched to their deficits (compensation approach; Cheavens et al. 2012). Non-intervention studies in our content analysis were predominantly deficits-focused and covered issues such as sleep and feeding problems, gastrointestinal difficulties, psychiatric disorders, emotional and behavioural problems, and challenging behaviours, without the goal of improving these conditions. We recognize that there is a critical place for these kinds of studies, as people with ASD often struggle with chronic and serious challenges that affect their health, well-being and overall development. The discrepancy between intervention and non-intervention studies suggests a future research opportunity for the study of ASD to move beyond examining core challenges to examining how people with ASD may be flourishing. As such, an aggregate body of well-being research emphasizing both difficulties and strengths provides us with a balanced outlook on the full human experience of people with ASD.
Interpersonal characteristics, self-determination and personal relationships were the most frequently coded strength constructs. The focus on interpersonal characteristics and personal relationships was not surprising given that social communication difficulties are a diagnostic hallmark of ASD, as previously mentioned. The focus on self-determination may correspond to the shift in the disability literature away from a restricted focus on the limitations of individuals with disabilities to a broader perspective in which capacities are also emphasized (Schalock 2004; Wehmeyer et al. 2000). Shogren et al.’s (2006) analysis revealed that 40% of strengths and mixed articles focused on a component element of self-determination (e.g. autonomy, choice making and self-advocacy) in the ID literature. We identified self-determination in studies that either focused on the concept broadly or the specific behaviours as outlined above and found it in only approximately 16% of articles. The first mention of self-determination in relation to ID emerged in Wehmeyer (1992), while its mention in relation to ASD specifically was later (Fullerton and Coyne 1999), which may explain this difference. Further exploration of these constructs is a noteworthy research agenda item: A strengths-oriented understanding of interpersonal characteristics and personal relationships as well as examining what it means for people with ASD to be self-determined will continue to shape the current knowledge base.
There is a clear opportunity for future research to more fully understand strengths of people with ASD, with special attention to constructs that were not identified in our random selection. Relatively few studies focused on motivation, satisfaction, pleasure, or positive character traits associated with the virtue and humanity, topics which have begun to emerge in recent years (e.g. Dekker et al. 2015; Hutzler et al. 2013) and may be of increasing interest. Other strength constructs such as positive self-esteem, positive affect, positive coping and positive traits of justice, transcendence, wisdom and knowledge, and courage were also not commonly coded, if at all. Some of these variables could be easily assessed as a secondary outcome of intervention trials or program evaluations (e.g. Diener et al. 2016), or as variables that may explain treatment success (Diener et al. 2014). There are also opportunities to develop novel ways of measuring strengths in people with ASD. For instance, Dillon and Carr (2007) reviewed intervention studies in which behavioural indicators of happiness were measured in adults with disabilities, including ASD, and found that behavioural measurements of happiness could be used to complement traditional intervention measurement outcomes. An understanding of a range of strength constructs would complement and enhance what we currently know about well-being of people with ASD.
Overall, there appears to be increasing attention given to harnessing strengths of individuals with ASD, but a greater shift toward more strengths-focused ASD work is needed in the field. The current study lays some initial groundwork and may function as a catalyst for future strength-focused research, which is essential to our understanding of what leads to optimal functioning. Findings from this study suggest that examining strength constructs appears to be relatively uncharted territory in ASD research. Rather than solely relying on pathology-based models of ASD that underscore individuals’ deficits, there is a need to study positive characteristics, strengths and assets. Based on the results of this study, we encourage future scholars to focus their research agendas on a strengths framework to advance the field. Strengths-focused research, particularly on positive character traits, may have implications on program development and treatment targets, and potentially on conceptualizations of ASD.
Several limitations of the current study are noteworthy. This study was a content analysis, not a systematic review, with only 25 to 33% of articles within each issue randomly selected. Random sampling is a useful method of improving generalizability (Nestor and Schutt 2014); however, it is possible that the results may not be representative of studies within these selected journals. Further, we selected articles in only five reputable ASD journals, in an attempt to capture studies that publish high-calibre ASD research, but as a result, information about studies in other journals was not obtained. It is possible that this pattern could be different in the broader range of journals that publish ASD research. In addition, the scientific quality or methodological rigour of studies was not evaluated and would merit investigation in future research. A systematic review can use the search terms developed in the current research to further characterize the field, taking these considerations into account. Finally, articles were only coded for a main focus on strength constructs; studies that may have included, but did not emphasize, strength constructs were not captured in our results.
PBR: designed the study, analysed the data and wrote the paper. VC: collaborated on the study design and coded studies. AM: collaborated on the study design and coded studies. VS: coded studies and updated the database. CA: coded studies. JW: collaborated on the design and writing and editing of the final manuscript.