Autism and Thriving: A Critical Review of the Academic Literature

Conceptual models of autism within research

Autism is not necessarily a natural category but a diagnostic status constructed by scholars who hold power to generate its meaning ¹¹ —known as “epistemic power.” Historically, autistic people have not held epistemic power to generate knowledge about their own disability, and conventional scientific knowledge was mostly formulated by non-autistic researchers/practitioners within a biomedical model. The biomedical model of autism operates in a binary dichotomy that classes people as “normal” versus “abnormal” ¹² and where autistic traits are seen as deficits compared with neurotypical functioning, requiring intervention. ² This conceptual framework is rooted in the idea that neurotypical functioning is the ideal standard for the human species, which has contributed to the wide dissemination of stereotypical and dehumanizing accounts of autism in research and broader social conversations. ¹³ Within the biomedical model, autism is also widely considered incompatible with a good human life, with poor outcomes such as mental ill-health ¹⁴ getting reduced to inherent features of autism and not social and environmental circumstances. ⁴

Recent debates focus instead on social and relational models of disability, arguing that some of the “poor” outcomes and challenges faced by autistic people originate in oppressive societal practices.^4,15 These arguments were posed, in part, by scholars from emergent autism advocacy movements, such as critical autism studies (CAS) ¹⁶ and the neurodiversity movement. ¹⁷ By situating autistic distress within a sociopolitical context, they highlight that autistic well-being may be impeded by contextual factors and harmful social relationships (e.g., inaccessible environments, discrimination, and stigma), as opposed to autism itself being an intraindividual obstacle to well-being. From a neurodiversity perspective, autism represents value-neutral, naturally occurring variability within human cognition. ¹⁸ Furthermore, CAS scholars have illustrated how contemporary knowledge about autism is not value-free but constructed by social agents who share preconceptions of what constitutes dis/ability, normality, and “good” outcomes. Often, the possibility of autistic people thriving in different ways may be dismissed by non-autistic people, including researchers and practitioners, because of bias and prejudice. ⁴ Autistic people have reported in research that the neurodiversity movement promotes thriving for them, ¹⁹ highlighting that different ways of understanding autism may have real-life repercussions.

Very little autism research has focused on autistic thriving, and where it has, it mostly used the reports of parents or caregivers of autistic people as opposed to autistic people themselves. Moreover, like most autism research in general, studies that investigate thriving and other related concepts have largely focused on researchers’ ideas around outcomes without input from autistic people. ³ This illustrates, once again, autistic people’s general lack of epistemic power. ⁴ Researchers and scientists partly mediate the production of knowledge about autism by maintaining and/or transforming research practices, which may impact the lives of autistic people in potentially harmful ways, ²⁰ such as perpetuating damaging rhetoric that can ultimately limit their rights. ¹¹ Scholars have reflected on the consequences of the lack of interpretive frameworks to account for “the richness and diversity of autistic experience,” ⁴ leaving autistic people “epistemically adrift.” ⁴ They highlight that not having concepts to describe your experience leads to lower well-being by further silencing minority groups. ⁴

This study

Lam and colleagues ²⁰ used CDA ¹⁰ to conduct a critical review of how autistic well-being is approached within autism research. They aimed to identify and critique the role of psychological institutions and discourses in the re/production of oppression by challenging the values, assumptions, and positionalities underlying research processes. CDA is an analytical tool that allows the researcher to investigate connections between language and society, highlighting that power inequalities can be maintained and reinforced through one’s choice of rhetoric—as it reflects assumptions that are socially, politically, and culturally situated. Critical reviews, in turn, are different from other literature reviews in that the aim is not to create a theory by gathering and analyzing existing evidence. Instead, they aim to provide a critical evaluation and interpretive analysis of the existing literature on a given topic, revealing “strengths, weaknesses, contradictions, controversies, inconsistencies, and/or other important issues with respect to theories, hypotheses, research methods or results.” ²¹ In critical reviews, researchers act as research instruments by using their perspectives to appraise and interpret the literature rather than primarily acting to summarize it. ²²

Following Lam and colleagues’ example, ²⁰ we also conducted a critical review of the literature on autistic thriving and used CDA to analyze how this construct is being approached within autism research. This is in line with autistic people’s research priorities in Scotland, as one of the top five priorities is “knowledge and attitudes towards autistic people/how we talk about autism.” ²³ This critical review attends to this priority by looking at how the choice of rhetoric in research impacts knowledge constructed around autistic thriving and autism itself. Elucidating potential biases and assumptions present in the young but growing research corpus on autistic thriving allows us to understand how this construct has been approached, in the hope that this critical exercise will invite researchers to reflect on how their positionality and rhetoric impact the generation of scientific knowledge of autism and, consequently, autistic people’s lives.

We do not aim to propose or create a conceptual model of autistic thriving but to critically examine and discuss the purpose (teleology) and value (axiology) of existing research on autistic thriving. Thus, the purposes of this study are to critically analyze and discuss (1) how the term “autistic thriving” is approached and conceptualized in autism research, (2) how autism itself is conceptualized in research about autistic thriving, and (3) the role of autistic peoples’ input in the research process.

Data sources and search criteria

We conducted a literature search to identify articles with an explicit and central focus on the construct “autistic thriving.” As recommended by Kahle and colleagues, ²² we used multiple approaches, including hand-searching reference lists and using search engines. Initially, we searched for articles containing the following keywords in the titles: (1) autis*, Asperger, developmental disorder, ASD, neurodiver* and (2) thriv* in Google Scholar, Semantic Scholar, and the databases PsycINFO, ERIC, and Web of Science. We also studied relevant article reference lists to identify other pertinent studies. This diverse approach in data collection is recommended for critical reviews, as this method often requires researchers to use nuanced and individualized discernment to appraise the literature, with the quality and value of the information being more important than its quantity. ²²

Our inclusion criteria comprised studies using any research methodology, which aimed to investigate, evaluate, discuss, and/or measure autistic thriving and that presented some level of distinction/definition of thriving. Studies that talked about autistic thriving but did not define or indicate a conceptual model for this construct were not eligible for inclusion. Research involving data collected directly from autistic participants and/or through the reports of stakeholders (e.g., parents, carers, clinicians, and teachers) was eligible for inclusion, as the level of autistic people’s involvement in the research, if any, is central to our discussion. Six articles fulfilling these criteria were identified, including three empirical studies,^9,24,25 one review article, ³ one perspective article, ²⁶ and one case study. ²⁷ A description of these studies is included in Table 1.

Positionality statement

The theoretical views of all authors are aligned with the social model of disability, in that we acknowledge that the concept of disability is socially situated, and we are critical of singularly deficit-based views of autism. We believe that autism research should prioritize autistic voices and views, fostering epistemic justice. Despite these similar views, the diversity in our backgrounds, positionalities, and expertise helped bring nuance to our analysis and facilitated bias mitigation. Our team is composed of both autistic and non-autistic members, with M.B. and K.S. being mixed-methods researchers, S.D.’s expertise lying in qualitative and arts-based methodologies, C.G. being an expert in quantitative and experimental designs, and C.J. being a social psychologist with qualitative expertise.

Analytical framework

We utilized Gee’s techniques of CDA ¹⁰ to analyze textual data from research articles. CDA is a form of discourse analysis that engages with the concept of “politics,” which involves looking at ways of speaking, writing, or acting that imply what is socially deemed “normal,” “desirable,” “good,” or “appropriate.” Gee’s techniques for CDA understand that people use language to build “significance, relationships, politics, connections, and to build sign systems and claims to know, as well as to privilege certain sign systems and ways of knowing.” ¹⁰ Language is also important within the field of autism research, as discourse both reflects and cocreates social constructions of dis/ability, influencing how disabled people are viewed and treated in society. ¹²

CDA’s techniques guide the researcher in asking questions about how language was employed in a piece of text to build seven areas of reality, which the author defines as seven building tasks. To analyze those building tasks, Gee ¹⁰ also prescribes six tools of inquiry, which assist the researcher in uncovering what a text is attempting to enact/build in the world. Gee’s CDA model is flexible, with researchers being able to privilege the use of tools that are more relevant to their research question. Thus, we specifically utilized the “Identities” building task to uncover how the rhetoric in the selected articles evaluated and positioned the identities and roles of autistic people; the “Signs, Systems, and Knowledge” building task to identify which ways of “knowing” autism were privileged; and the “Politics” building task to understand how autistic functioning and thriving were constructed. The analysis was guided by questions related to how language used in the studies attempted to build identities for the subjects involved, to indicate whose views were sought and deemed valuable, and to imply what (e.g., behaviors and dispositions) and who (e.g., autistic people and neurotypical people) was deemed “normal,” “good,” “adequate,” or the opposite. Table 2 illustrates this coding process.

The analysis was carried out by the first and second authors (S.D. and K.S.), who initially analyzed each article individually and then discussed their analyses in weekly meetings. Furthermore, the statistical measure called Cohen’s Kappa, which is used in research to assess levels of agreement in how two researchers analyze and categorize texts or discourses, was also used to assure validity in this study. We carried out a Cohen’s Kappa analysis with 80% of the data, with an agreement rate of 92.68% and a Kappa of 0.853 (k = 0.853, p < 0.001), indicating an almost perfect agreement. The analysis notes and results were shared, discussed, and agreed upon with all other authors.

Category 1: Thriving as a species-standard outcome

This category discusses three quantitative studies^9,24,25 that, overall, treated autistic people as passive data-givers and approached thriving as a measurable process leading an individual toward the attainment of pre-established outcomes, which were deemed as a universal standard within the human species. The overarching goal of these studies was to quantitatively explore associations between thriving and other constructs in autistic people and other disabled groups through parent or caregiver reports.

All articles were rooted in a biomedical model of disability and autism, operating in a “normal” versus “abnormal” dichotomy where disabled groups were treated as a juxtaposed, homogenous “other.” Autism was described as a fixed disorder, and autistic people were introduced, overall, as a group that has difficulties and problems in their functioning in comparison with an ideal. Accordingly, neurotypical functioning was viewed as the species-standard ideal from which autistic people deviated in negative ways. Such descriptions of autism included the terms “pervasive,” “problem behaviors,” and “weakness.” There was no disclosed autistic input or involvement, with all three articles exclusively seeking the reports of parents or caregivers in their data collection and using scales validated for parent/caregiver report. Thus, autistic testimony was not actively sought or utilized in constructing autistic thriving in these studies, and autistic experiential expertise was dismissed and devalued throughout. However, it is worth noting that all articles in this category pertain to youth, in that the lack of autistic participation may be due to researchers’ assumptions that young people are less able to describe their thriving than adults, therefore requiring proxy-report, or because researchers may be hesitant to include children and youth as participants due to ethical considerations (e.g., issues surrounding informed consent).

Person-first language (PFL; e.g., person with autism/autism spectrum disorder [ASD]), as opposed to identity-first language (IFL; e.g., autistic person), was adopted throughout the articles, which does not reflect the current majoritarian language preference of English-speaking autistic communities, who largely prefer IFL. ²⁸ Recent research, ²⁹ however, highlights the variability in autism language trends across journals over time, indicating that the use of PFL and IFL has shifted according to journal guidelines and emerging social conversations. The study by Weiss and Burnam-Riosa ²⁴ was published before most of the literature indicating the preference for IFL by the autistic community, and the use of PFL was significantly predominant in the journal where the study was published. ²⁹ The studies by Sellitto and colleagues ²⁵ and Simpson and colleagues, ⁹ however, were published amid the recent “boom” of discussion and research on the preference for IFL, which was also accompanied by a significant increase in IFL across journals. ²⁹ This language choice was not discussed or clarified by the authors.

In all three articles, autistic thriving was conceptualized and measured within a pre-existing framework derived from positive psychology, namely, positive youth development. ⁶ This model, originally developed with and for neurotypical youth, posits that thriving involves the growth of positive attributes that can be broken down into six dimensions, known as “the six Cs” (competence, caring, confidence, connection, contribution, and character). The growth of those attributes is facilitated by both individual strengths and ecological resources, with the process of thriving ultimately leading the person toward an idealized personhood comprised of “socially or structurally valued behaviors.” ²⁴ Overall, this framework was readily presented to the reader without discussing its theoretical underpinnings and how those may impact the model’s suitability for autistic people specifically.

In all three studies, thriving was measured through a scale where parents or carers of autistic people reported their agreement with statements concerning autistic participants’ display of the “six C” attributes. The statements included in this measure implied a sense of universal truth around what constitutes a “good,” “appropriate,” or “desirable” outcome across different life domains (e.g., relationships and school) and personal qualities (e.g., notions of justice, morality, and empathy). For instance, the attributes competence and connection included, respectively, the statements “(the participant) knows how to behave” and “(the participant) has positive relationships with their parents, siblings, and other family members, and with friends, teachers, coaches, or mentors,” ²⁴ indicating a presumed consensus around what “good behavior” or “positive relationships” look like to anyone.

Despite adopting a framework where the development of attributes fostering thriving involves both internal qualities and external resources, the only variables accounted for as “external resources” were reported family income^9,25 and a measure of involvement in home, school, and community. ²⁴ This measure comprised a scale ³⁰ where caregivers assessed the frequency of participation (daily to never) and level of involvement (very involved to minimally involved) of disabled individuals in different activities and events (e.g., “neighborhood outings,” “field trips and school events,” and “homework”). The scale, however, did not contemplate ecological aspects such as the environmental accessibility and social acceptance of those individuals in the activities/places in question, in that the frequency of participation and level of involvement could be evaluated simply based on individual initiative—which is, arguably, an internal disposition as opposed to an “external resource.” Accordingly, the difficulties faced by autistic people and other disabled groups, such as worse rates of mental health,^31,32 were almost exclusively framed on an intraindividual level, with little discussion of broader environmental, social, cultural, and/or political barriers that could impact autistic people’s ability to thrive. This further emphasized the idea of autism itself as a “problem,” which is illustrated in the following excerpt: “Challenges with home participation may be related to the higher levels of restricted interests and behaviors (…), emotional and behavioral problems (…), and parental stress and mental health problems (…) found in individuals with ASD and their families compared to those with ID without ASD.” ²⁴

In that sense, the measurement of autistic thriving and other constructs (e.g., sociocommunicative ability and adaptive behavior) included in these studies did not account for potential variability, nuance, or complexity across individuals and communities. The statements presented to the parents/carers for assessment did not incorporate elements unique to the experiences of autistic people and other disabled groups in the samples. For instance, research published before the publication of the three articles in question indicated that autistic people may experience sensory overload in certain social events ³³ and that there are mutual communication gaps in cross-neurotype interactions. ³⁴ One article, ⁹ however, discussed this neurotypical focus as a potential limitation in their study, indicating concerns that the measures used may not capture the uniqueness of autistic experiences and recommending future research on what autistic thriving looks like to autistic people themselves. Similarly, Weiss and Burnam-Riosa ²⁴ and Selitto and colleagues ²⁵ recommended that future research utilizes self-report, indicating the sole use of caregiver report scales as a potential limitation as well.

The definition of thriving as a process conducting an individual toward behaviors that are “socially or structurally valued” indicates the presumed existence of a structural/societal consensus, and in a society built by and for neurotypical people, the standard in question arguably relates to neurotypical dispositions. Hence, the articles are not contradictory in their theoretical premises and choice of measurement, for if autistic people are placed in a binary paradigm where they are seen as deficient compared with neurotypical people, then a “better” outcome will naturally reflect closeness to neurotypical functioning. In fact, one of the articles expressly hypothesized that participants who had an intellectual disability would thrive more than participants who, in addition to their intellectual disability, were also autistic. ²⁴ In that sense, participants were generally expected to embody a more neurotypical disposition, or to be less disabled, to attain higher rates of “thriving.” However, as they were likely to perform poorly in proxy-reported measures based on a neurotypical ideal, the results served to further corroborate the idea that autism is something to be intervened with.

In that sense, the articles operated within a kind of “Catch-22” cycle as discussed by Chapman and Carel, ⁴ where the theoretical framework—in this case, a deficit-based view of autism and disability—informed methodological choices that guaranteed inevitable results. This process is visually illustrated in the flowchart in Figure 1.

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FIG. 1.

Flowchart depicting the findings discussed in Category 1.

Category 2: Thriving as a variable construct

The three articles included in this category were (1) a psychotherapist’s reflections and recommendations for working with autistic women and promoting their thriving within therapeutic practice, ²⁶ (2) a review article ³ using Martha Nussbaum’s ³⁵ capabilities approach to identify areas where autistic people thrive or struggle, and (c) a case study that proposes a theology-informed model of autistic thriving. ²⁷ All articles perceived thriving as a variable, nuanced, and complex construct overall, indicating some level of dedication to understanding autistic thriving from an autistic perspective. The models of thriving presented by these articles’ accounts did not prescribe specific outcomes to be attained by a thriving person but instead situated thriving within both personal and ecological dimensions. Although all authors acknowledged that thriving may look different across individuals and populations, they differed considerably in the level of autistic involvement/input in how they chose to approach and conceptualize this construct.

All three studies described autism with nuance, indicating neutrality toward autistic people’s differences, acknowledgment of their support needs and contextual barriers, as well as a positively framed recognition of their strengths—with autistic people being described as capable, ²⁶ creative, ³ and contributors to the health and diversity of communities. ²⁷ All authors also elaborated on their intentional language choices and clarified to the reader how those were reflected upon. Zener ²⁶ opted for both IFL and PGL throughout the article, explicitly intending to reflect the different preferences of the author’s clients. Both Pellicano and colleagues ³ and Leidenhag and King ²⁷ used IFL, reflecting the current preference of most autistic people in English-speaking countries. ²⁸

These studies also discussed broader contextual factors that impact autistic people’s lives and ability to thrive, highlighting cultural and environmental barriers they frequently encounter and calling attention to the responsibility of external people, institutions, and environments in this dynamic. Pellicano and colleagues, ³ for instance, discussed how despite generalized beliefs that autistic people inherently lack social skills, non-autistic people also interact less successfully with autistic people. Zener, ²⁶ in turn, emphasized the importance of workplaces and community settings being informed about autism, accommodating autistic people’s needs, and fostering their acceptance. Leidenhag and King ²⁷ emphasized that accounts of autistic thriving demand awareness of contextual factors, acknowledging the need for accessible environments and positive relationships.

In terms of the studies’ conceptualizations of thriving, Zener ²⁶ argued that autistic thriving comprises “living a meaningful life consisting of pursuing passions, finding their tribe and accepting their differences,” ²⁶ explaining that this model was shaped by their experience working as a psychotherapist for autistic women. When describing the therapeutic dynamic, the author depicts a relationship of overall cooperation and shared decision-making power. However, although this model of thriving was presumably oriented by collaborative interactions with autistic women, no mention of direct input from autistic people is mentioned. Similarly, Leidenhag and King ²⁷ proposed a model of neurodivergent thriving that is guided by the premises of the neurodiversity movement and the work of autistic scholars. The authors defined neurodivergent thriving as the “adaptive growth towards purpose which requires ongoing individual, relational, and aspirational development,” ²⁷ arguing that this conceptualization is aligned with the notion of neurodiversity as a nonpathological difference and is therefore suitable to account for autistic experiences. Even though this model was oriented by the work of autistic scholars in its theoretical underpinnings, there is no mention of direct input from autistic people either. The literature review by Pellicano and colleagues, ³ in turn, borrowed the capabilities model of Martha Nussbaum ³⁵ and framed the 10 capabilities it prescribes as essential preconditions for autistic people to build thriving lives “in their own terms.” ³ This article directly criticized biomedical views of autism and highlighted the importance of participatory autism research that meaningfully involves autistic people. Accordingly, the review was expressly authored by a team of both autistic and non-autistic researchers, indicating direct autistic involvement in how autism and autistic thriving were approached.

Despite different levels of autistic involvement, all three articles indicated an alignment with social models of disability and the neurodiversity view of autism. This was illustrated, at times, through direct criticisms of the traditional deficit-based rhetoric or by the explicit statement of the authors’ positionality. Zener, ²⁶ for instance, stated that the clinical framework conceptualized in the article embraces neurodiversity. Similarly, Pellicano and colleagues ³ included a critical discussion of mainstream autism research that is rooted in researcher-established outcomes, which devalues autistic accounts of their priorities and goals. Finally, Leidenhag and King ²⁷ explicitly condemned the biomedical rhetoric that pathologizes autistic behavior and promotes interventions aimed at “normalization,” arguing that this ultimately attempts to eradicate autistic personhood. In summary, these studies acknowledged that different people may thrive in different ways, defending accounts of autistic thriving that are rooted in autistic experiences and that acknowledge broader ecological factors in which autistic people are embedded. A visual summary of this analysis is illustrated in Figure 2.

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FIG. 2.

Flowchart depicting the findings discussed in Category 2.

Strengths and limitations

One significant limitation of this study is its small sample size, with only six articles fitting our inclusion criteria. The current academic literature on autistic thriving is underdeveloped, with a small number of peer-reviewed articles specifically focusing on autistic thriving published to date, which limits the scope of this research. Similarly, the small number of articles reviewed used different methodologies, making direct comparisons across studies more difficult. However, as critical reviews prioritize value over quantity of information, the smaller sample conversely afforded space to critically discuss the data.