research paper on capability approach

The Capability Approach and Child Well-Being: A Systematic Literature Review

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• Published: 23 July 2022
• Volume 15 , pages 2043–2063, ( 2022 )

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• Mónica Domínguez-Serrano   ORCID: orcid.org/0000-0001-6162-777X 1 &
• Lucía del Moral-Espín   ORCID: orcid.org/0000-0001-6733-5831 2  

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Child well-being is a dynamic concept currently under revision due to its complexity and the need to incorporate traditionally overlooked perspectives. An essential aspect of this revision is considering children as active agents in defining the concept itself and incorporating new elements that enrich the more traditional economics-based and adult-centred conceptualisation. In these regards, the capability approach (CA) provides valuable theoretical support for an expanded understanding of child well-being. Therefore, this article aims to offer a systematised review of the literature from the last two decades that uses this approach in examining children and childhood. To do so, the authors examined the main international databases and conducted relevant additional searches, identifying 63 journals that have published capabilitarian articles over the last two decades. Our findings show that most publications concentrate on recent years, with an expansion of the methodologies used and the contexts addressed. Although education seems to be one of the primary interests of this literature, there has also been an increasing range of children’s realities and topics observed that we summarised in 10 categories. Between then, we dig deeper into the subsegment that specifically addresses the category of child well-being. Our review reveals that quantitative approaches and European contexts are predominant within these papers, and we analyse how they concern different spaces, well-being dimensions and intersectionalities.

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1 Introduction

Studying child well-being from a broad perspective that goes beyond traditional views and incorporates new and interdisciplinary aspects is a trend that has emerged quite strongly in the field of social sciences in recent decades. This interest has arisen in a context of profound changes in the understanding of children and childhood, supported by at least three processes (Bruck & Ben-Arieh, 2020 ): the United Nations Convention on the Rights of the Child (CRC); the development of the so-called New Sociology of Childhood (Qvortrup, 1999 ; James and Prout, 1997 ; Gaitán, 2006 ); and the theory of Child Development Ecology based on a bioecological model of human development (Bronfenbrenner & Morris, 1998 ). In this context, the literature on child well-being has grown significantly and has spread rapidly across different approaches and disciplines. As a result, in our view, it is essential to have a systematised framework of study in order to develop the analysis further.

Two essential aspects of this field of work are considering children as active agents in the very definition of the concept and incorporating new approaches that are capable of enriching a more traditional economic-based and adult-centred conceptualisation, such as those that explore subjective approaches to well-being (Ben-Arieh, 2012 ; Casas, 2011 ; Casas, 2019 ). To deepen this line of research, the capability approach (Sen, 1985 ) in connection with the new Sociology of children and childhood constitutes a valuable tool since it provides essential elements for an analysis of well-being from a multidisciplinary, relational and interconnected perspective on childhood.

The capability approach (CA) focuses on what people are really capable of being and doing (ends) and not just on the resources they have and the public goods they can access (means). This implies asking, "What are people really able to do and what kind of person are they able to be?” and leads to a normative commitment to conceptualising well-being in terms of capabilities (what people can do and be if they so choose) and functionings (what they are actually achieving in terms of beings and doings, the capabilities that have been realised) (Robeyns, 2017 ; Robeyns & Byskov, 2021 ). As a result, the CA involves a twofold notion of well-being: achieved well-being (focussing on functionings) and well-being freedom (connected to one’s capability set) (Sen, 1992 ).

From this approach, well-being is understood as the set of opportunities a person has to choose and make a life that they have reason to value. The focus is on the capabilities (also referred to as real or substantive freedoms) they have to decide, for good reason, for or against the realisation of certain ways of living their lives (functionings-outcomes). Furthermore, the CA is equipped with a theoretical tool that can be used to systematically analyse the relationship between subjective assessments and social contexts, the concept of "adaptive preferences" (Fegter & Richter, 2014 ). In addition, the notion of “evolving capabilities” (proposed by Biggeri et al., 2011 ; see also Biggeri & Santi, 2012 ) addresses how the opportunities, capacities and the agency evolve over time in a dynamic process. It is particularly useful for children (although probably also interesting for adults) as it acknowledges the dynamic and complex process of interaction between resources and individual and social conversion in feedback loops that reshape, at every stage, children's capability set.

Concerning childhood, “the Capability Approach is a normative framework that can be used to evaluate children's issues, children's issues may also challenge the CA framework itself and force us to revise it" (Comim et al., 2011 , p. 5). We believe that, following Sen's approach, the human development of children can be seen as "an expansion of capabilities" (Sen, 1999 ; Kellock & Lawthom, 2011 ; Fegter & Richter, 2014 ). Therefore, although the CA concern is with the "expansion of capabilities" of children, it is not primarily based on an idea of childhood as developing into adulthood (becoming) but, rather, on the idea of a continued expansion of freedom (present and future). Nonetheless, some authors highlight the importance of safeguarding both children’s well-being and well-becoming (Peleg, 2019 ) and suggest that the functionings and capabilities that matter should be selected considering well-being and well-becoming as guiding principles (Schweiger & Graf, 2015 ). This implies focussing on the fundamental character of the “capability to develop” to become capable of "doing and being" in new and rapidly expanding ways (Chawla, 2015 ; Gardner, 2015 ).

Accordingly, taking into consideration aspects valued by children as essential to living a good life is one of the new elements incorporated in these types of analyses (Domínguez-Serrano & del Moral-Espín, 2018 ). One of the strengths of this approach is that it offers a concept of well-being that brings together the theoretical perspectives of both structure and subject (Fegter & Richter, 2014 ). It considers children as recipients of freedoms, but not exclusively (Biggeri et al., 2006 ). Well-being is also described as a phenomenon that children not only experience (or not) but also create themselves (Kellock & Lawthom, 2011 ). Using a CA means that it is necessary (although the consensus on this point is not absolute) to include children's standpoint on their well-being and consider the information they generate as the basis for evaluating their well-being. This does not imply that they are the only "experts" on their well-being, nor that no other views should be included in the evaluation. Indeed, it is essential to do so in a way that links the structural and subjective dimensions, looking at the positive freedoms necessary to decide how one wants to live one's life (Sen, 2004 ). In this sense, applying the CA to children implies positioning oneself in favour of their capacity for self-determination (Ballet et al., 2011 ; Brando, 2020 ; Hart & Brando, 2018 ). Despite this, not all studies using a capabilitarian perspective are necessarily participatory; in many cases, they continue to use indicators defined by experts, without much input from local, heterogeneous communities (Fegter & Richter, 2014 ; Dalyot & Dalyot, 2018 ).

Among the elements that have traditionally received less attention and are not present in the most common measurement are activities that transcend an economic-centred vision and, thus, incorporate aspects from a multidimensional perspective. CA is very well-equipped for analysing these activities, and dimensions more linked to the personal, caretaking, and emotional spheres are fundamental for the individual and collective comprehension of children and society as a whole.

For this purpose, we systematically reviewed the existing capabilitarian literature on children and childhood. As a result, this article is organised into distinct sections. The first one addresses the methodology we followed to develop the bibliographic review. The following section shares the results of this systematisation, exploring the type and year of publication, the country of focus, the specific theme addressed, and the methodology used. After that, we present a more detailed review of the spatial focus, the methodologies, the dimensions and the intersectionalities of a selection of the 36 documents directly related to the theme of well-being. Most of them include the word "well-being" or "wellbeing" in the title and/or in the keywords. In addition, of course, the notion of well-being was central to their argumentation.

2 Systematic Review: Method and Results

This article aims to respond to the need for systematisation mentioned above by reviewing the existing literature that uses CA to study children and childhood and, specifically, child well-being. For this purpose, the most relevant international databases, Web of Science (WOS) and Scopus were examined. In addition, to try to include a broader range of research, a detailed analysis was carried out of the bibliography compiled annually by an important institution in the field, the Human Development and Capabilities Association (HDCA). Until recently, this compilation was published in the Journal of Human Development and Capabilities. We did this to include non-indexed literature but still relevant to the topic. Below, we summarise the process we used to analyse each database.

This revision has an international scope and uses English as the primary language, although it includes some French, German and Spanish texts. In principle, we were interested in all kinds of works: working papers, articles, book chapters, books, papers and proceedings. We analysed the period 2000–2020, two decades in which there has been an evident boom in literature in Children and Childhood Studies and the CA. Due to the high volume of published works, it was crucial to delimit the object of study carefully. Thus, the goals that we set out for this search were:

To examine the definitions of child well-being compatible with a multidisciplinary and comprehensive vision.

To examine the existing literature on the CA applied to children.

The methodology used for the analysis in WOS and Scopus was structured in the following phases (see Fig.  1 ):

Phases of the search and analysis process

After verifying the relevance of the proposed revision, systematised searches are carried out, defining search equations around the concepts of `children’s capabilities’ focused on the field of Social Sciences. For this purpose, we used the following search equations:

Capability Approach and Childhood:

The search generates some results that need to be filtered according to the following criteria: (1) eliminating duplicates; (2) detecting works belonging to areas that are not pertinent to the object of study (epidemiology and medicine); and (3) identifying works that, although compatible with the object of study, are not relevant because of their different subject matter (capabilities identified with their acceptance in the educational environment or especially studies regarding high abilities).

In order to delve deeper into the literature connected to the CA but not indexed in the previous databases, we searched the bibliographies that the HDCA presents annually. The HDCA bibliographies we examined covered the period between 2004–2018.

After the various filtering processes, the final sample to be filtered came out to 121 (120 plus one that was a duplicate) in WOS. In the case of Scopus, filtering was done by focusing on the concept of "well-being", which limited the result to the 190 documents that would constitute the basis for the next phase of the research process. After various filters to delete documents already collected in the previous search, we retained 173 documents. We need to add that the review of the bibliography published by the HDCA started by examining the 14 documents, which contained 914 references. Finally, 34 of them meet our search criteria.

After unifying our databases, the result was 166 documents to be analysed. Some clarifications need to be made about them. First, an Erratum was eliminated because it was not relevant when systematising the results, so finally, 165 documents were considered. Of these, there were two book reviews, one of them discussing a book that was also included in the search results, and the other appraising a book that included relevant topics in one of its chapters but not in the rest of the book and, hence, it was not included in the database. Some books are relevant in their entirety to the study, and others only include some related chapters. Thus, in the final review, four complete books were considered. In order to avoid duplicating the information that would result from considering both the book and its chapters, we decided to analyse each one of the book chapters independently instead of the whole book. Therefore, the chapters of books analysed may belong to the same book (of the four commented above) or to another one that does not appear in the database. Concerning the analysis, it is also worth noting that one document consisted of research notes.

Once the initial phase of the search with its various steps was completed, we wished to review works that were more directly aligned with the object of study. Therefore, the final selection of documents took into account the following exclusion criteria related to the object of study: 1) Focus is on medical condition, 2) The focus is on the well-being of parents or adult people, 3) There is no specific analysis of children as a subgroup; and 4) It is not possible to have the English version of the document.

Using this criterion resulted in 144 documents which are analysed in the following section.

3 Analysis and Systematisation of the Results

The 144 documents that emerged from the systematised search constitute a set of essential materials for anybody who wishes to familiarise themselves with literature that analyses childhood from the CA. The documents can be organised according to their type, as seen in Table (Table 1 ). Footnote 1

Even though the bibliographic review began in 2000, we did not find many relevant results until 2005–2010. Indeed, there has been an exponential growth of pertinent publications, in particular articles, in recent years, proof of the growing interest in the subject within international and interdisciplinary research (Fegter & Richter,  2014 ). However, despite the theoretical and methodological advances, empirical applications of the CA are still scarce (Steckermeier, 2019 ) (Graph 1 ).

Types of documents by years of publication. Source: Own elaboration

In addition to classifying the documents by year of publication, we were interested in examining three other essential aspects: the country the study was focused on, the specific theme and the methodology. Concerning the first of these aspects, it is noteworthy that despite the traditional common association of the applications of the CA to impoverished countries or the Global South, we found that many were conducted in Western countries. This was especially true when we focused on studies examining specific contexts or collecting empirical data. This finding is especially relevant because it coincides with a more general tendency that we are witnessing of scholars in the Global North incorporating and using approaches and methodologies that were previously more established in countries of the Global South (Table 2 ).

We found few studies carried out in Latin American countries, which may be explained by the fact that some of the relevant literature may be in Spanish. Specifically, only three studies discuss experiences in Colombia, Nicaragua, and Mexico and seven other studies that comparatively analyse the situation in various countries and include several Latin American countries. Similarly, there were 14 works, plus another seven made up of comparative studies, which referred to countries in the African context. The remaining studies, consisting of more than 30, were in Asian countries.

The second element considered was the theme or topic of the articles (Table 3 ). The frequency of the topics did not seem to be associated with the publication year. It should be noted that some titles were counted several times because their themes were multiple and not exclusive. Among them, education is the most advanced topic, focusing on the right to quality education and well-being. However, for the porpoise of this paper, it is also worth highlighting the articles that refer to well-being in a more general sense and to which we will refer later.

Third, we were interested in analysing the methodology used in the documents examined (Table 4 ). In this case, we included both articles and book chapters. Interestingly, although a significant number of the documents relied on theoretical bibliographic analyses, others described a diversity of methods and methodologies.

Therefore, the analysis confirms that CA is a multimethod approach (Graph 2 ). Bibliographic and quantitative methods seem to be the ones that remain all over the period, although qualitative articles gained a place over the last decade.

Articles by methodology and years. Source: Own elaboration

In addition to the three aspects mentioned above, we thought it would be pertinent to note what kind of diffusion the articles had. For this purpose, we catalogued the journals in which they were published. The publications appeared in a total of 63 different journals, and Table 5 shows those in which there was more than one article, which in many cases is due to it being a special issue. This gives an idea of the dispersion of the subject matter in different types of publications, making a compilation of information of this type very beneficial for those working in the field.

The results highlight the openness of Education journals to the CA, which is coherent with the predominance of papers on educational matters. However, the main objective of our paper is child well-being. For this reason, in the following section, we will focus on a more detailed analysis of the 37 papers classified under the topic 'well-being'.

4 Children, Well-Being and Capabilities

Acknowledging the multifaceted dimension of child well-being and its complexities as a research topic is essential. Over the last decades, significant methodological and conceptual progress has been made concerning different aspects of the notion and the indicators to measure it (Ben-Arieh et al., 2001 ; Ben-Arieh, 2005 , 2008 ): there has been a clear move from a focus on minimum standards for children (survival indicators), to a broader concept connected to the idea of the quality of life and its implications for children’s lives. This implies focusing on positive aspects of their well-being and not only on thresholds determined by the absence of negative (mainly material) aspects. In addition, the increasing consideration of children as actual “beings” and not just as “becomings” has favoured a further move to the focus on their present lives' well-being and not only on what will affect their future adulthood. A necessary parallel development has favoured a wider recognition of the ecological diversity of children's lives and the need to incorporate new domains and subdomains into the analysis.

Capabilitarian studies addressing child well-being appear to have gained prominence among high-impact journals in the last decade, especially since 2015 (see Table 6 ). However, there are some pioneering papers almost a decade earlier, such as that of Biggeri et al. ( 2006 ) and Di Tommaso ( 2007 ). In 2011, the editors of the book Children and the Capability Approach (Biggeri et al., 2011 ) stressed in the introduction that the CA "has not yet adequately engaged with children's issues, although much has been written about education generally from this perspective" (Comim et al. 2011 , p. 4). In this sense, they state that the book's contribution is that it "develops the capability approach (CA) as a conceptual framework for understanding children's well-being" (Comim et al. 2011 , p.3). Fegter and Richter ( 2014 ) only three years later published their clarifying chapter "Capability approach as a framework for research on children's well-being," where they state that the CA:

is receiving a lot of attention in research on child well-being. The approach seems to be particularly appropriate for countering the problems and challenges that are emerging for research in this field from the perspective of New Social Childhood Studies (NSCS). (Fegter & Richter, 2014 , p. 379)

Specifically, the text addresses the issues of adaptive preferences, freedom and choice, and the "here and now" (being and becoming), and then reviews and comments on a significant number of studies on child well-being from a capability approach. In this section, we will begin with that review and proceed to update it. The total number of works analysed that refer specifically to well-being is 37. One additional book that is necessary to mention is Children and the Good Life (Andersen et al., 2010 ). It includes a specific section, Part II, on the Capability Approach that relates it (in particular Martha Nussbaum's ideas) with the principles from New Social Childhood Studies (Clark & Eisenhuth, 2010 ). Moreover, it offers a review of the empirical analysis based on the CA and elaborates on the notion of "evolving capabilities" (Biggeri et al., 2010 ) and on the perspective of subjective well-being (Ziegler, 2011 ).

4.1 Geographical Areas and Well-Being Research

The documents analysed refer to different geographical contexts. Table 6 shows the number of documents by country of focus with the year of publication. Although the pioneering one addressed the Indian context (Di Tommaso, 2007 ) soon, the approach was transferred to study mainly European realities.

As shown in Table 6 , European countries are overrepresented. However, this does not dilute capabilitarian scholars' commitment to tackling poverty. Poverty and deprivation are one constant issue within well-being papers addressing both Global North and Global South contexts. In most cases, this analysis focuses on specific countries. Only a few studies (therefore, here is a gap to fill in) offer cross-country evaluation. Within the European context, D'Agostino et al. ( 2018 ) addresses the effects of the 2008 economic crisis on the well-being of children by reflecting on the responses that various welfare systems offered to common challenges. The author studies how, in the European context, the capabilities of children living in Greece and Italy, whose well-being at the beginning of the crisis period was lower than that of children living in France and the United Kingdom, suffered much more during the financial crisis. Both Greece and Italy are familiarist welfare regimes, and both strongly reduced the proportion of state support to families during this period. In parallel, Wilmes and Andresen ( 2015 ) propose an explorative comparison of child Well-Being in Nepal and Germany and call for more open ideas about what constitutes and composes (good) childhood in the different and non-western contexts. With a broader global approach, the International Survey of Children’s Well-Being “Children’s Worlds Study” (ISCWeB), a worldwide research survey on children’s subjective well-being, is the base for two papers (Steckermeier, 2019 , Raciti & Vivaldi Vera, 2019 ). However, the representative data collected by this study offers great potential for studying children’s own perceptions and evaluations of their well-being, their daily activities and time use.

4.2 Spaces for the Well-Being

Another possible focus of analysis addresses how the CA helps investigate well-being around specific spaces. The most frequently addressed are educational spaces: schools and schooling (Biggeri & Santi, 2012 ; Hart, 2009 ; Hart & Brando, 2018 ; Kellock, 2020 ; Kellock & Lawthom, 2011 ; Terzi, 2014 ). The CA is described as a paradigm that contributes to the design or evaluation of different educational models, considering whether they promote children's agency, participation rights, and human flourishing. Furthermore, followings the previous elaboration on young people’s capability to aspire (Hart, 2012 , 2016 ), Hart and Brando ( 2018 ) consider schools as spaces that enable children’s exploration and development of the values and aspirations that promote agency and well‐being and agency.

In addition to school, other settings where children spend most of their time are family and the neighbourhood. In this sense, considering safety as one of the fundamental domains for children's well-being, research has also focused on the importance of discriminating between safety in different areas of life: home, neighbourhood, and school, analysing the link between agency and safety (Steckermeier, 2019 ).

Other studies address how access to nature (in relation to urban planning) contributes to well-being and health (Chawla, 2015 ). In the same strand, Babb et al. ( 2017 ) adopts the CA to understand how Australian children's movements in their neighbourhood environment support their well-being. The results show substantial travel limitations and children's independent mobility, which contrasts with the positive view of the neighbourhood they have.

4.3 Methodological Approaches

Regarding methodology, the papers employ a variety of analytical methodologies. However, as shown in Table 7 , the empirical application of the CA from a quantitative perspective has attracted the most attention.

These quantitative studies often opt for the selection method Alkire ( 2008 ) proposed, which involves using available data to select dimensions or indicators. This is the system Pedace ( 2009 ) used to approach the study of the functionalities linked to the well-being of children and adolescents in the United Kingdom or by the del Moral-Espín and Domínguez-Serrano ( 2020 ) for selecting indicators in Spain.

Some of these quantitative studies have explicitly focused on the well-being of children living in poverty, trying to understand it beyond merely monetary deprivation, for example, the work of Potsi et al. ( 2016 ). It pertains to the Italian context but could be replicated in other contexts by using the EU-SILC survey. In the Taiwanese context, Lin and Chen (Lin & Chen, 2017 ; Chen and Lin, 2020 ) focus on the reality of children and adolescents living in poverty in Taiwan and identify four possible states of well-being: guaranteed well-being, functional deprivation, capability deprivation and double deprivation. Their conclusions highlight that the situation of deprivation of capabilities is more complex to overcome than other forms of deprivation (Chen & Lin, 2020 ). In the case of Mexico, Valadez-Martinez ( 2016 ) analyses the impact of conditional aid programs, concluding that improvements in family income around the time of birth are positively associated with the psychological, cognitive, motor and emotional well-being of children from 4 to 6 years of age. Raciti and Vivaldi Vera ( 2019 ) also study the impact of conditional transfers but, in this case, analyse a pilot project in Italian cities and focus on children and adolescents' emotional well-being. To this end, the authors developed a Children's Standard Well-being Index based on the system of children's rights.

Concerning qualitative research, beyond the more traditional methodologies based on interviews and ethnography, visual methods are also applied. For example, in addressing well-being in the educational setting, Kellock and Lawthom ( 2011 ) conceptualise capabilities in collaboration with elementary school children using visual and photo-voice methodologies to engage and discuss with children and capture alternative creative frameworks of well-being and capabilities. Kellock ( 2020 ) has recently developed further this work by creating a dialogue between the CA and community psychology.

Other authors stress the value of finding a balance between ethnographic and experimental/correlational designs, developing a complementarity in mixed methods (Chawla, 2015 ). Apart from those already mentioned by Andresen and Fegter ( 2011 ) or Domínguez-Serrano et al. ( 2019 ), this type of approach remains a minority. However, it seems to be very useful to analyse the mobility or interaction of children in a specific territory (Babb et al., 2017 )’. Emphasising the participatory aspects, Dalyot and Dalyot ( 2018 ) propose using georeferencing and collaborative mapping practices to explore and monitor child well-being and generate, through this process, data that is "owned" by the community but shared as public domain, available for public access.

Bibliographic studies tend to have an unspecified focus instead of addressing contextualised children’s realities. Many of these papers are particularly useful for comprehending the debates around children's agency and the CA (Hart, 2009 ; Hart & Brando, 2018 ; Fegter & Richer, 2014 ; Biggeri & Santi, 2012 ; Cabezas & Schweiger, 2016 ). Hart and Brando ( 2018 ) stress that the development of children’s agency is a fundamental goal of education and a well‐being achievement. Stoecklin ( 2019 ) incorporates a participatory tool (the actor's system) and points out methodological challenges in converting children's right to be heard into a real capability to participate. The analysis shows how language itself can be a conversion factor in implementing the right to be heart. In light of this, the importance of designing research protocols that emphasise children's agency is highlighted. The consideration of child well-being together with child well-becoming permeates Biggeri and Santi’s ( 2012 ) exploration of the potentialities of the pedagogical approach Philosophy for Children and Cabezas and Schweiger’s ( 2016 ) work around the ethical issues related to girl's bodily integrity.

4.4 Dimensions of Well-Being

The papers address a range of dimensions related to well-being. One key point is that capabilitarian conceptualisations of well-being differ from the dominant utilitarian views and measurement of well-being based on the accumulation of resources and wealth by individuals, households and nations (Hart, 2009 ; Kellock & Lawthom, 2011 ). The conception of children’s “good life” in many capabilitarian documents follows the Aristotelian tradition of not restricting well-being to the material aspects of life and revives Aristotle's notion of eudaimonia or happiness, often translated as 'human flourishing' (Fegter and Richter, 2014 ; Chawla, 2015 ; Dominguez-Serrano & del Moral-Espín, 2018 ; Raciti & Vivaldi Vera, 2019 ).

We identified a set of papers that sought to establish participatory definitions of the dimensions that comprise well-being. They included children as participants in the process of identifying a set of capabilities relevant to well-being. In this line, we found the pioneering paper by Biggeri et al. ( 2006 ), developed from the work done with children participating in the "World Congress of Children on Child Labour" held in Florence in May 2004. The authors presented a survey-based methodology for conceptualising and identifying, using a bottom-up participatory approach, a list of capabilities relevant to children. According to their findings, education, love, and care were the most relevant capabilities for children. We also found the works of Anich et al. ( 2011 ), conducted in England, Kellock and Lawthom ( 2011 ) carried out in Uganda and Domínguez-Serrano et al. ( 2019 ) focused on the importance of education and being literate to children. We were very interested in Andresen and Fegter’s ( 2011 ) study about children who lived in poverty in Germany and addressed how they conceived of justice and a good life. The results of their mixed-methods research revealed the importance of family, welfare services, friends and physical closeness, non-violence, school and learning, health care, pets, play and vacations. Studies by Dominguez Serrano et al. ( 2019 ) used a similar approach working with children in Spain who took part in Children Municipal Councils. The authors and the children discussed and validated a list of capabilities relevant to the well-being of children in southern European regions. In their conclusions, children demonstrated a multidimensional understanding of well-being and perceived a change in the relevance of capabilities throughout the life process. The researchers observed that the capabilities children deemed most relevant for themselves to have a good life (education and affectivity, emotions and love) did not exactly coincide with those children thought adults needed the most, although variations by sex and age were observed.

In parallel, there is a growing interest in the subjective dimensions of child well-being. We identified several articles using a quantitative approach based on the analysis of the data generated by the ISCWeB. For example, Steckermeier ( 2019 ) underlines how explicitly considering children's agency with respect to their safety contributes to a better understanding of their subjective well-being. On the other hand, López Reyes ( 2019 ) analyses the interactions between hypothetical individual-level predictors and country-level moderators. The results of this study are generally consistent with the vision of well-being as a psychological construct that changes with the material and cultural environment of children.

Other studies address the possibilities of developing an integrated view of well-being using objective and subjective measures collected through surveys (Domínguez-Serrano et al., 2019 ), mix-method (Babb et al., 2017 ) or creative methods (Kellock, 2020 ).

4.5 Intersectionalities, Identities and Inequalities

Although only one of the papers explicitly includes the notion of "intersectionality" (see Cabezas & Schweiger, 2016 ), many of them explore the ways in which the intersection of age with gender or other socio-cultural and economic differences shape children’s lives and identities. Some texts specifically address gender issues. Cabezas and Schweiger ( 2016 ) focus on girls (girlhood) and bodily integrity, the right to be free from physical harm and harassment, and experience freedom and security concerning the body. They state that the capability approach offers an ethical framework that allows for the assessment of girls' well-being and well-becoming concerning the potential and often subtle threats they face. Using a quantitative approach, Addabbo et al. ( 2014 ) conducted a gender analysis of two capabilities, the capability to sense, imagine and think and the capability to play in Italian boys and girls. Their article pays special attention to the effects of the interaction between the child and their father, mother or caregiver, showing how the joint activities carried out vary according to the sex of the child and the region where they live. On the other hand, D'Agostino et al. ( 2018 ) examine gender disparities in children's well-being by considering seven capabilities and the intersection of family structures in four southern European countries: Portugal, Italy, Greece and Spain. The results indicate that gender has an effect on well-being and the need for gender-specific and dimensional policies to improve children's well-being.

Another (reduced) set of articles focusing on Australia (Mishra et al., 2018 ), New Zealand (Cram, 2019 ) and Mexico (Veladez-Martínez,  2016 ) include ethnicity in their analysis, while this issue is overseen in most of the other regions. For example, the experience of indigenous Australian children is compared with that of the general population, concluding that indigenous children suffer a higher rate of disadvantage that increases with age and is particularly severe in terms of "bullying" and "bodyweight" (Mishra et al., 2018 ). Other studies focus on the well-being of Mäori children and emphasise how important it is that the development of indicator sets in specific contexts include these groups as key participants so that it reflects Mäori understandings and serves Mäori interests (Cram, 2019 ).

Some research focuses specifically on the experiences of children with disabilities. Terzi ( 2014 ) highlights how focusing on educational capability equality while placing the well-being and agency of children with disability at the core of questions of fair educational provision implies a broader reconsideration of pedagogy, curricula and policy.

5 Discussion and Conclusions

The growing interest in the field of child well-being has contributed to the great diversity and dispersion in the existing literature. Hence, this article constitutes an innovative and, in our opinion, helpful work for those who aim to approach this topic, particularly with a focus on capabilities. Since we consider the CA to be a fundamental tool for studying childhood and children's lives, we aimed to conduct a systematic review of the existing literature regarding the application of this approach to children, with particular attention to child well-being. Therefore, we aim to contribute to identifying and filling the existing gaps in research on child well-being from this approach. In doing so, we have focused on the geographical areas, the spaces, the methodologies, the well-being and well-becoming dimensions, and the intersectionalities addressed by a selection of 37 documents that emerged from a systematic review.

One limitation of this methodology is directly related to the particular methodology applied. Systematic search methodologies can sometimes leave out documents that are relevant to the field in question. This issue was the subject of debates within our research team and again arose during the review process of the article. One example of a document that was left out of the sample is Pelenc ( 2017 ). This exclusion was due to the fact that our search was constructed around the notion of childhood (we includes “child*”, “boy*” and “girl*”) but not specifically around adolescence (*teenager or *adolescen) that, sometimes, is more connected to youth studies.

Even so, our analysis shows that capabilitarian perspectives of child well-being help acknowledge the objective and subjective dimensions of well-being from both a structural and an individual perspective, expanding the notion beyond material issues. Moreover, this approach favours considering specific groups' realities through various inequality axes, gender, among others, and addressing how children own understand the "good life”. As a result, an important set of papers consider children as the experts in their lives and use, for example, children’s self-reports as the basis for assessing their well-being.

However, the results reflect gaps in empirical research in the Global South and the predominance of quantitative approaches. In fact, another facet that needs to be further developed is the design and application of research instruments that are not dominated by a Western ideal of childhood and are considered universally valid (Liebel, 2005 in Wilmes & Andresen, 2015 ). In this sense, a more profound and explicit commitment to intersectional perspectives may favour new and more complex understandings of child well-being from the CA.

In addition to that, despite the significant advances that have taken place in recent years, the debates on whether the CA is fully applicable to children remain open. It is also necessary to continue exploring the themes of autonomy, agency and self-determination as they relate to children. Should children be provided with extensive opportunity freedom in the first stage, or this process freedom should only be granted as they eventually become adults? In this debate, Bovin and Stoecklin ( 2014 ) warn us against extreme positions that do not help move forward in the discussion. At this point, the concept of "evolving capabilities" proposed by Biggeri et al. ( 2011 ) is much more insightful as probably “the most appropriate combination between opportunity and process freedom cannot follow on the divide between children and adults, but needs to take account of this dynamic process.” (Bovin & Stoecklin, 2014 , p.4).

These debates do not hinder the approach's potential to address children's well-being. On the contrary, we believe they contribute to equipping us in the face of new challenges such as the ones posed by, for example, the Covid19 pandemic context. The CA helps us identify and understand children’s goals and the resources, contexts and actions that might make achieving these goals possible (Thomas & Stoecklin, 2018 ). This complements the (child) rights-based perspectives by arguing that rights can only become effective if children are situated in a position where they can actively and genuinely enact them. Indeed, a large part of the analysed documents commented on their findings' political implications and proposed a series of recommendations for designing and developing policies and programs promoting child well-being. The CA can be very enlightening in all these areas, and we are confident that research in this field will continue to yield fruitful contributions in the coming years.

It should be noted that the starting point was the WOS analysis, conducted in successive phases and with successive databases, the aim being to complete the analysis. Therefore, the existence of 64 documents in Scopus does not imply that these are the existing ones but rather that some of those already collected by WOS should be added.

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Health, Disability and the Capability Approach: An Introduction

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This special issue of the Journal of Human Development and Capabilities focuses on two areas of substantial and growing importance to the human development and capability approach: disability and health. The research on disability, health and the capability approach has been diverse in the topics it covers, and the conceptual frameworks and methodologies it uses, beginning over a decade and a half ago in health (Ruger 1998) and more than a decade ago in disability (Baylies 2002).1 We are pleased to share a set of articles in these two areas. The first set of articles focuses on disability, while the second set of articles focuses on health and the health capability paradigm (HCP), in particular.

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Sen's Capability Approach as a framework to the practice of development

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A capabilities approach to understanding and supporting autistic adulthood

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• Autism spectrum disorders

There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

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Introduction.

Autism is a lifelong neurodevelopmental difference that influences the way a person interacts and communicates with others and experiences the world around them 1 . For decades, autism research focused predominantly on autistic children 2 , in line with the very earliest descriptions of autism 3 , 4 and the tendency for society to depict autism as a disability of childhood 5 . The result is a substantial lack of understanding about the opportunities and challenges that autistic adults face in building their futures, achieving their goals and living satisfying and fulfilling lives. These issues clearly matter, however, and in the past decade there has been an increase in publications on autistic adulthood, a new journal specifically dedicated to autism in adulthood, a notable increase in funding dedicated to adult-related issues 6 and numerous policy interventions designed to assist autistic adults to live good lives 7 .

Serious obstacles nevertheless continue to prevent researchers, clinicians, educators, policymakers and the broader public from fully grasping the nature of contemporary autistic adulthood. Overcoming these obstacles is vital not only because they constrain understanding but because they also hinder efforts to inform and transform the services and supports that might enhance autistic adults’ lives.

Paramount among these obstacles is the orthodox approach taken in conventional autism research, in which there is an overfocus on ‘deficits’ or ‘impairments’ of autistic adulthood and an overemphasis on specific attributes of individuals as opposed to the broader contexts in which autistic adults live 8 , 9 . This conventional research paradigm derives both from long-standing conventions in medicine, which prioritize a putatively objective standard of ‘bodily health’ over a subjective understanding of ‘well-being’ 10 , and from the developmental psychopathology literature, which stresses the importance of ‘patterns of maladaptation’ in shaping the life course of autistic people 11 . Consequently, individual autistic adults’ behavioural, cognitive and neural functionings are frequently compared with some typical or ‘normal’ level of ability that is held as the ideal ‘state of health’ 9 ; interventions and treatments typically aim to remediate these apparent shortcomings to align functioning with the accepted norm. This narrow focus on deficits results in a radically constrained understanding of the experiences that shape autistic lives, limiting the range of supports and services to those that seek to ‘change the individual’ rather than consider how to ‘change the world’. Conventional research efforts are also routinely conducted without meaningful input from autistic people themselves 12 , meaning that often the wrong questions are posed and findings are misinterpreted. Research of this kind can be said to be ‘lost in translation’ 13 . As such, most research on autism prioritizes researcher-defined normative life goals without discovering how much they matter to a diverse range of autistic people 14 , 15 .

In this Review, we — a team of autistic and non-autistic researchers — propose an alternative way of approaching adult autism research. First, we provide some context by briefly discussing the diagnosis and developmental trajectories of autistic adults. Next, we describe Nussbaum’s capabilities approach 16 , 17 , which outlines ten central capabilities that enable people, whether autistic or non-autistic, to lead lives that are of value to them on their own terms rather than to meet a predetermined normative standard set by others. We then examine each of the ten capabilities in the context of available autism research. This approach enables us to evaluate the opportunities and challenges facing autistic adults, the forces shaping them and the ways in which services and other interventions might enhance the quality of their lives.

Diagnosis and developmental trajectory

Adult diagnosis of autism first became available in the 1980s (ref. 18 ) and was further encouraged by changes in the Diagnostic and Statistical Manual of Mental Disorders , fifth edition (DSM-5) (refs. 1 , 19 ) several decades later. Many autistic adults initially seek their diagnosis following concerns about social relationships and mental health, sometimes precipitated by a personal crisis or by the diagnosis of their own children. For many, this search for diagnostic clarity is preceded by decades of feeling ‘different’ and of relationship or employment difficulties 20 , 21 . Challenges to adult autism diagnosis are discussed in Box  1 .

A growing number of adults self-identify as autistic without a formal diagnosis 22 . This self-identification is controversial in research and clinical communities but is often accepted in the autistic community, in part because, even in high-income countries, autistic adults often remain undiagnosed 2 , 23 , 24 and, even when formally diagnosed, are only minimally supported 2 , 7 , 23 , 24 , 25 . Those diagnosed later in life may have higher self-reported autistic traits and poorer quality of life, especially mental health, than those diagnosed in childhood 26 .

Following the normative tendencies of the conventional approach to autism research, the vast majority of studies that have examined the developmental trajectories of autistic adults diagnosed in childhood focus on areas thought to be critical for achieving ‘good’ adult outcomes. In longitudinal studies, these outcomes are often defined in terms of a set of standard ‘life achievements’, on which autistic adults typically fare badly 14 , 15 . For example, autistic adults with and without intellectual disability followed from childhood are less likely than non-autistic people to hold down a job, live independently or have friends and intimate relationships 2 , 14 , 15 . Other longitudinal studies have examined whether people remain ‘autistic’ (that is, meet instrument and/or clinical thresholds for autism) as they move from childhood into adulthood. These studies show that the diagnostic status of individuals diagnosed in childhood generally endures into adulthood 15 , 27 , with the exception of a minority of individuals who no longer display sufficient core autistic features to warrant a clinical diagnosis, which is sometimes described as an ‘optimal outcome’ 28 . Yet despite initial variability, many people show little change in researcher-defined ‘autistic symptoms’ as they move into adulthood 29 , potentially placing them at greater risk for poor psychosocial outcomes in adulthood 30 .

More detailed research on the quality of life of autistic adults also largely focuses on the achievement of standard life outcomes, irrespective of whether those outcomes are considered meaningful by autistic adults themselves 31 , 32 . Studies that have complemented standard, researcher-defined measures with more subjective, autistic person-led measures (such as quality of life) consistently demonstrate that outcomes are more positive when subjective factors are accounted for 14 , 15 . For example, an autistic person who is highly dependent on others for their care — a so-called ‘poor outcome’ according to the standard framework — might nevertheless be happy and subjectively enjoy a very good quality of life. Another autistic person who no longer meets the diagnostic criteria for autism — a so-called ‘good’ outcome — might struggle to find their way in the world and feel different and distant from others. Approaches that focus on researcher-defined measures in this way limit understanding and risk failing to grant autistic people the dignity, agency and respect they deserve.

In considering how to respond to these limitations, it is helpful to establish two clear aims. First, research into autistic adulthood must recognize that people’s life chances (opportunities each individual has to improve their quality of life) are shaped by a range of factors beyond the person, consistent with an ecological perspective 33 . That is, quality of life is influenced both by biological factors at the heart of the conventional medical model and a broader set of contextual factors as stressed by the social model of disability 34 . Second, no one, autistic or not, has high quality of life if their life goals are primarily set by others. Thus, quality of life should not be measured by a standard set of outcomes judged to be important by researchers, clinicians or policymakers. Instead, the goals of each individual’s varied human life should be at least partly set by the person themselves 35 .

Box 1 Challenges for autism diagnosis in adulthood

In most countries, adults seeking an autism assessment and diagnosis face severe challenges, and the individual is expected to initiate and navigate the process 24 . Although there are published guidelines 7 , 294 , major differences exist between guidelines and actual experience 295 . Adults seeking diagnosis report lengthy waiting times and prohibitive costs 2 , 24 , and encounter clinicians who lack a nuanced understanding of autism 75 , 174 . Further, the guidelines are far from standardized in their recommendations for the use of adult diagnostic tools and there is much variation in practice 2 , 7 , 294 .

The process of adult autism diagnosis is also challenging owing to difficulties in recovering early developmental history and the self-reported tendency of many autistic adults to use strategies (masking or camouflaging) to minimize autistic features 274 , 275 . Although autistic adults of all genders have been reported to mask 275 , it is more often reported among women 296 , which could be one reason why twice as many men present to adult diagnostic services 297 . These findings dovetail with a growing recognition of gender bias in autism diagnosis 2 , 7 .

More research concerning adult autism diagnosis is needed. For example, little is known about the diagnostic experiences of autistic adults with intellectual disability 24 , about how autism is identified in different cultural contexts or about adult autistic experiences in the Global South 298 . It is likely that autistic adults in many low and middle-income countries do not have access to formal diagnosis, post-diagnostic supports or the positive transformations in self-understanding and connections to a peer community that often accompany diagnosis 181 , 217 , 261 .

A capabilities approach to autistic lives

Martha Nussbaum’s 16 , 17 capabilities approach to quality of life, which has been widely used to analyse social disadvantage in multiple settings, satisfies both of the aims outlined above. First, according to the capabilities approach, a human ‘capability’ is not an intrinsic ability that a person has or does not have solely by virtue of who they are. Instead, ‘capability’ refers to the actual opportunity to be or do something that is facilitated or constrained by features of the person and by the broader contexts in which a person is embedded. The relevant contexts can include close family and household influences; everyday community interactions; educational institutions; economic factors, including the cost of living; services and supports, including accessibility and performance of healthcare institutions; and the broader social and political context, including social attitudes towards autism. Second, flourishing human lives are characterized by a set of these capabilities which enable a person to achieve any number of a range of outcomes, rather than by the attainment of a small number of pre-specified outcomes. These capabilities are considered foundations for a range of doings and beings; they shape what a person can do and, critically, who and how they can be in the world. Capabilities are not a narrow or specific set of achievements, nor are they possessions. Similarly, capabilities cannot be ranked or interpreted by a group of people, such as professionals, or reduced to a single score on a standardized scale. Instead, they refer to the preconditions for a broad range of ways of living.

According to Nussbaum, there are ten central capabilities that most people need if they are to be able to choose and create lives that are meaningful and fulfilling on their own terms 16 , 17 (Table  1 ). In what follows, we outline how analysing the life chances of autistic adults through this lens can enable a far richer understanding of autistic adults’ lives of all abilities (see Box  2 ) than the conventional research approach. We do so by highlighting the strengths and challenges of autistic adults in each of the ten central capabilities, and their causes, and consider the potential supports, services and changes in societal attitudes that might help to transform those challenges into strengths. Analysing these capabilities provides a way to examine the lives of autistic adults without narrow normative judgement, while also directing attention to issues that require intervention and support. Readers are advised that some of this material may be distressing and evoke difficult past associations.

Box 2 Inclusivity and the capabilities approach

The capabilities approach focuses on the real opportunities that are open to each person to live in ways that are meaningful to them. Applying such an approach to research on autistic adulthood enables identification of the ways in which autistic people can thrive on their own terms and the nature of the obstacles to this thriving. Diverging from more conventional medical frameworks, the key to this approach is the value of personal autonomy: the belief that all people, including autistic people, should enjoy the right to be at least ‘part author’ of their own lives 35 and that their quality of life should always be measured, at least in part, according to their own aspirations.

Although widely used in other settings 299 , the capabilities approach is novel in the context of autism, partly because it has previously been suggested that this sort of autonomy-inflected approach is ill-suited to a substantial proportion of the autistic community 300 . Non-speaking autistic people, those with intellectual disabilities and/or those with very high support needs have sometimes been considered unable to communicate or conceptualize their precise wishes in the ways the capabilities approach seems to require. From this perspective, the capabilities approach is applicable only to those who can make and articulate judgements about their own life purposes and not to the entire autistic population.

Some have called for a fine-grained approach to the heterogeneity within autism, suggesting that the autism spectrum should be split into those for whom an autonomy-inflected approach could be appropriately applied and those for whom the traditional medical model may be better suited 300 . Similarly, others have called for the creation of a separate ‘profound’ or ‘severe autism’ diagnostic category for those with the most severe impairments 7 , 301 .

We do not believe that we need to be this pessimistic. There is no clear scientific basis for segmenting the autism spectrum in the way that proponents of a separate ‘severe’ or ‘profound’ autism label suggest. Moreover, doing so poses grave risks, potentially excluding people deemed ‘severe’ or ‘profound’ from the concern, dignity and respect offered to others 302 , 303 . Nonetheless, it is crucial for future research into autistic quality of life to consider people of all abilities. Such research should investigate whether augmentative and alternative communication can enable those with higher support needs to make their needs and desires known 304 . Future research should also examine the effectiveness of available long-term services and supports to enable those with the greatest needs to fulfil key aspects of quality of life. This work would acknowledge the inevitable complexities of deploying the capabilities approach in these instances while recognizing that it remains possible to develop a broad and subtle framework for the evaluation of quality of life across the whole autistic community.

The first central capability is “being able to live to the end of a human life of normal length; not dying prematurely, or before one’s life is so reduced as to be not worth living” 17 . Autistic adults are currently at a substantial disadvantage in this capability. There are persistent patterns of premature mortality in the autistic population 36 , 37 . Autistic people are twice as likely to die prematurely as non-autistic people 36 , 37 , 38 , and this risk is greater for autistic women 36 , 38 (but see ref. 37 ) and those with intellectual disability 36 , 37 , 38 . The lives of autistic people are, on average, 16 years shorter than those of non-autistic people 36 . The risk of death is elevated in autistic people who experience poor physical health or chronic illness (including epilepsy) 36 , 37 , 38 , 39 . Little is known about the influence of social and economic factors, including access to healthcare, on these mortality rates, but it is widely hypothesized that an important contributor is the extent to which physicians listen to, and learn from, their autistic patients 40 .

Among the specific causes of premature mortality, there is a higher risk of suicide 41 , 42 . Suicide attempts are more frequent and more likely to result in death in autistic people than in non-autistic people 36 , 37 , 43 , 44 , 45 , possibly owing to co-occurring psychiatric conditions 36 . Research focused on understanding why autistic people are at increased risk of self-harm and suicide has identified individual risk markers common to those in the general population, including (younger) age 46 , low mood and rumination 47 . More work is needed to understand potentially unique risk markers for increased suicidality in autistic people, including broader interpersonal causes (such as thwarted belonging and perceived burdensomeness) which might mediate associations between autistic traits and suicidality 48 , and systemic issues (such as clinicians’ lack of knowledge 49 ).

More generally, autistic quality of life in older adulthood (adults aged 50 years and older 50 ) — albeit as assessed using normative measures — is seen as considerably poorer than that in non-autistic older adults 51 . Social isolation and loneliness are major issues for all older adults, leading to greater risk of dementia and other serious medical conditions 52 . Both social isolation and loneliness might disproportionately influence older autistic adults, who might be more prone to reclusiveness 53 , despite many autistic adults describing a longing for interpersonal connection 54 . For example, in a study in which autistic adults’ experiences of growing older were elicited, one autistic participant said “I think I’m a born loner, quite frankly … Maybe I’m not the kind of person to have a life. Oh, I’d love it, with a person that would understand me” 54 . There are few longitudinal and participatory studies focusing on autistic older people, including under-represented populations who might have poorer life satisfaction. Thus, little is known about how autistic adults can be supported to live a full and satisfying life into old age in diverse sociocultural contexts 55 , 56 .

Bodily health

The second central capability is “being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter” 17 . Once again, the evidence suggests that autistic adults are disadvantaged in this regard. Co-occurring physical conditions are common across the autistic lifespan 57 , 58 , 59 and are more prevalent than in the general population for almost all conditions assessed 43 , 58 , 59 , even when lifestyle factors are considered 58 . Autistic adults with intellectual disability have distinctive needs 59 and might be especially vulnerable to poor physical health 60 .

Risks for most physical health conditions are further exacerbated for autistic women 58 , 61 . Understanding the mechanisms for these differences in health outcomes is critical for reducing these inequalities. Moreover, further clarifying the temporal development of these health problems should inform how interventions are designed to prevent and treat them 62 . There are at present very few studies on autistic people’s reproductive health. Autistic women report challenging experiences with menstruation, including a cyclical amplification of sensory differences and difficulties with emotional regulation 63 , 64 , and autistic women are at greater risk for pregnancy complications 65 . Autistic women also report significant deterioration in everyday quality of life during menopause 66 . None of these concerns have yet been investigated in depth. Likewise, there are no studies specifically addressing the reproductive health experiences of autistic men, those with intellectual disability and/or those who are non-speaking; no studies have adopted a less gender-binary approach to reproductive health in autistic adults. This absence of research potentially leaves crucial areas of experience unsupported by clinicians and other policy interventions.

Autistic adults also face barriers to healthcare 67 , 68 , 69 . Despite greater healthcare utilization, medication use and higher healthcare costs than the general population 70 , autistic adults report more unmet health needs 71 , lower utilization of preventative care 71 and more frequent use of emergency departments 71 , 72 than non-autistic adults. Healthcare settings are often inaccessible to autistic adults, with significant risk of sensory and social overwhelm , miscommunication and lack of autistic-informed care 67 , 73 . Autistic people also experience reduced coordination of care compared with non-autistic people, particularly during the transition from paediatric to adult services 74 . Thus, autistic adults are often left to fend for themselves in navigating the healthcare system 75 , resulting in negative healthcare experiences and feelings of distrust 66 , 67 .

Autistic adults also report poor patient–provider communication (in both directions): autistic adults often face difficulties identifying and articulating their physical health symptoms 76 and professionals often do not appreciate the need to adapt their communication style for autistic patients and do not take their autistic patients’ concerns seriously 67 , 68 , 71 . Clinicians’ limited knowledge of 68 , 69 and lack of confidence in 75 understanding autistic adults’ specific needs further exacerbate these difficulties. Some tools have been developed to assess barriers to healthcare access experienced by autistic adults from their own perspective 71 or from their caregiver’s or healthcare provider’s perspective 77 . The person-related, provider-related and system-related barriers identified using these tools should facilitate future research that seeks to improve the care and health of autistic people 71 , 78 . However, research designed in collaboration with autistic people is needed to assess the most effective ways of improving their healthcare experiences 56 , 67 , 78 .

Many other external factors influence autistic adults’ physical health, such as access to affordable, appropriate housing. Initial studies suggest that autistic adults might be over-represented in homeless communities at rates substantially higher (12–18% 79 , 80 ) than adult population prevalence estimates (1% 81 ). The range of challenges facing autistic adults might predispose them to homelessness, and reduced social support networks might compound other risk factors, including unemployment, making it difficult for autistic adults to exit homelessness.

Other housing challenges also influence this crucial capability. Compared with other people with disabilities, autistic adults are less likely to live independently, leaving them vulnerable to the inadequacies of institutionalized housing. Formal institutional living and similar settings that purport to be community-based, but are often only nominally so 82 , have been criticized for displacing people from their families and communities and for providing poor and unresponsive services to residents 83 , 84 . Nonetheless, autistic adults continue to be over-represented in more restrictive and segregated settings 85 .

In sum, the bodily health of autistic adults is severely compromised at present in many regards, owing to failings in clinical provision and in the broader social and economic context within which they must lead their lives.

Bodily integrity

The third capability is that people should be “able to move freely from place to place; to be secure against violent assault; having opportunities for sexual satisfaction and for choice in matters of reproduction” 17 . This capability is underpinned by a person’s right to make decisions about their body.

There are good reasons to be concerned about autistic disadvantage in accessing this capability. Autistic children are at substantial risk of experiencing multiple forms and repeated occurrences of victimization and abuse 86 , and this vulnerability persists into adulthood 87 , 88 , 89 , 90 . In particular, there are elevated rates of sexual victimization in autistic compared with non-autistic adults 89 , 90 , especially in autistic women 91 , 92 , 93 and those who identify as a gender minority 92 or as a member of the LGBTQI+ community 94 . This increased vulnerability might be exacerbated by the fact that autistic people often have reduced access to good quality, effective sexual education 95 , which can impart vital protective knowledge, as well as by broader structural inequalities (for example, lack of access to healthcare 67 , 68 , 69 ).

Autistic adults also experience increased rates of physical assault 87 , 92 and domestic violence, largely perpetrated by people known to them 90 . Autistic women, particularly those who report multiple traumatic experiences, emphasize deeply distressing betrayals of trust 91 and how they often “just couldn’t see it coming” 93 . Worryingly, these already high victimization rates are likely to be an underestimate: autistic adults are less likely to report experiences of violence to the police 87 or even to confide in others 87 . Autistic adults who experience victimization therefore receive neither the requisite mental health support nor the critical social support that could reduce the likelihood of developing post-traumatic symptoms.

Concerns about physical safety also influence the ability to move freely. Many autistic adults want to be able to access work and go about their daily activities within their communities 96 , and parents often want this independence for their children too 96 . Yet both groups worry about safety. Use of public transportation can be challenging for autistic adults owing to lack of accessibility 97 and difficulties with wayfinding and traffic judgement 98 . Furthermore, despite research showing that autistic drivers are more rule-abiding than non-autistic drivers 99 and are no more likely to be at fault for a police-reported car crash 100 , few autistic people take up driving 101 , partly because of perceived difficulties in spatial awareness, motor coordination, processing speed and executive function 96 . Consequently, autistic adults can remain reliant on their parents. As one autistic adult expressed in a focus group on understanding autistic adults’ transportation needs and barriers: “If I want to go shopping in the middle of the day I can’t. I have to wait for my mom to come home from work” 96 .

Finding a balance between autonomy and safety is critical. Autistic children and adults can be more susceptible to wandering 102 , 103 , and parents sometimes advocate the use of measures such as tracking devices 104 . Yet wandering can occur for many reasons 102 and is often purposeful 104 . Researchers and activists warn of the negative impact surveillance technologies can have on people’s independence and urge investment in alternatives such as community supports and safety skills training 104 , 105 .

Bodily integrity is inextricably linked to other capabilities. Violations of bodily integrity have adverse effects on other capabilities 106 , including mental health 107 , bodily health, interpersonal relationships and sense of agency. Threats to bodily integrity are also likely to influence autistic people’s sense of sexual well-being and their freedom to achieve it. Long-held views of autistic people being uninterested in sexual experiences 108 have been firmly quashed by research showing that autistic adults desire sexual relationships to a similar extent as non-autistic adults 109 , 110 . Autistic adults in satisfying relationships are more likely to report greater sexual satisfaction, just like non-autistic adults 111 . They also identify with a wider range of sexual orientations 94 , 109 , 112 and gender identities 113 , 114 , 115 , 116 , their sexual ‘debuts’ occur at a later age 117 and they have fewer lifetime sexual experiences 112 than non-autistic adults. The lack of qualitative studies on the realities of autistic adults’ sexual lives limits understanding, despite the fact that this topic is prioritized by the autistic community 118 .

Senses, imagination and thought

The fourth capability focuses on being “able to use the senses, to imagine, think, and reason — and to do these things in … a way informed and cultivated by an adequate education … being able to use imagination and thought in connection with experiencing and producing [creative] works … Being able to have pleasurable experiences and to avoid nonbeneficial pain” 17 . The dominance of the conventional medical model has meant that autism is often associated with deficits in this regard 119 . There is often a presumption that autistic adults will struggle with higher-order cognition or have low intelligence owing to poor performance on standard intelligence tests 120 . This stereotype persists even though there is little evidence for it in the everyday experience of the autistic population 121 . There is an even greater presumption of low intelligence in autistic people who are non-speaking or do not use traditional forms of communication 122 , who are routinely under-recruited in research 123 . Similarly, researchers, clinicians and educators have long presumed that creative and imaginative skills and aspirations are limited in autistic people 124 .

However, the predominant use of standard intelligence tests can lead to an underestimation of autistic people’s intellectual ability 120 , particularly in non-speaking people 125 . Autistic people have also been shown to excel at producing novel responses on creative tasks 126 and are increasingly recognized for their creative talents 127 , with major companies investing in autistic people’s ‘out-of-the-box’ thinking 128 . These strengths have been linked to autistic people’s different way of perceiving the world, including detail-focused processing style 129 and enhanced perceptual abilities 130 , which might be underpinned by heightened sensory perception 131 .

Nevertheless, autistic people are, in general, poorly served by the educational environments that might further enhance this capability 132 . They regularly encounter sensory overwhelm within the physical school environment 133 , struggle with complex social expectations and interactions 134 , experience bullying and social isolation 135 , and are stigmatized by a presumption of low competence 136 . Moreover, limited attention is given to their specific needs, strengths and preferences 132 , 137 , including by school staff who lack confidence in supporting autistic students 138 . Being excluded from 139 or not completing 140 school can have persisting negative effects on mental health and well-being.

Increasing numbers of autistic adults are enrolling in higher education 141 , but barriers exist there too. Autistic adults rarely receive relevant supports and accommodations, partly because they are hesitant to disclose their diagnosis or find it difficult to reach out for help 141 and partly owing to the absence of formal transition planning 142 . Consequently, autistic adults are at high risk of dropping out of university 143 . There is also limited research on the destinations of autistic students who complete higher education 144 , so it is unclear how to best respond to these challenges.

The senses, imagination and thought capability also emphasizes the importance of being able to take pleasure from sensory experiences. Although research tends to focus on the challenges that autistic sensory differences — such as experiences of sensory overload — bring to people’s everyday lives 145 , sensory stimuli can also be a source of pleasure 146 , 147 . For example, one autistic adult reported enjoying “touching metal a lot … cold smooth metal is, like, just amazing” 147 . There is also evidence that autistic adults with limited spoken communication in a supported living environment find joy in the everyday, for example in the sound of the washing machine on the last spin or the feel of bubbles while dishwashing 146 , 148 .

However, these distinctive sources of pleasure are often pathologized. This is captured by the debate over certain ‘repetitive motor stereotypies’ such as hand-flapping 1 , which have been reclaimed by autistic adults as ‘stimming’ 149 . These behaviours tend to be perceived as an individual problem with no clear purpose or function that prevent the person from learning skills and interacting with others 150 . Stimming behaviours are often the target behaviour for interventions that promote ‘calm’ or ‘quiet’ hands 151 (cf. ref. 152 ). However, there is very little evidence that stimming behaviours are harmful to autistic people or their peers (the same cannot be said for self-injurious behaviours, which might also be purposeful but are nevertheless harmful to the person). In fact, it now seems likely that stimming behaviours can serve as a source of pleasure or reassurance or a form of self-regulation 149 .

The next capability is defined as “[b]eing able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing … not having one’s emotional development blighted by fear and anxiety” 17 . The empirical literature shows that autistic adults have more difficulties recognizing others’ emotions 153 , 154 and identifying and describing their own emotions (alexithymia) than non-autistic people 155 , 156 . However, emerging work suggests a far more nuanced picture: autistic adults describe feeling emotions and empathy intensely 157 and often experience deeply satisfying emotional lives 158 .

At their most extreme, the conventionally reported difficulties with emotions were thought to preclude autistic people from the capacity to love or desire meaningful romantic and intimate relationships 159 . However, research is inconsistent with this claim 160 . Romantically involved autistic adults report high relationship satisfaction 93 , 161 . The strong bonds that autistic adults report with their partners, particularly with those who are also autistic 160 , extend to their autistic children, with whom they describe an intense connection and love 162 .

These reports speak strongly against an understanding of autism as a ‘disorder’ of affect. Rather than lack of interest, autistic adults often cite significant challenges with initiating and maintaining romantic relationships 154 , including difficulties reading and interpreting others’ emotions 161 , which can impact their capacity to remain romantically involved. The stereotyped assumptions of non-autistic people that autistic people are uninterested in interpersonal relationships might also be an obstacle 163 . These challenges can intensify feelings of loneliness and are linked to significant negative emotional experiences and poor mental health 164 . Autistic adults who desire intimate connection but whose needs are unfulfilled might be at particular risk of depression and low self-worth 164 , 165 .

This loneliness, depression and poor self-perception can take a substantial toll on mental health and well-being 164 , 166 , 167 . A substantial proportion of autistic adults experience a co-occurring psychiatric condition during their lifetime, with anxiety and mood disorders being the most common 168 , 169 . Rates of co-occurring psychiatric conditions are somewhat lower for autistic adults with intellectual disability 170 , but these rates might be underestimated owing to a lack of detailed understanding in how best to characterize and measure mental health in this context 168 . The risk of developing mood disorders increases with age 168 and autistic adults are at elevated risk of developing post-traumatic stress disorder 107 . Some mental health problems in autistic adults have been attributed to everyday discrimination and internalized stigma 171 .

The reliance on mental health assessments and diagnostic criteria that were established in non-autistic people 168 , 172 , 173 and a lack of necessary expertise among health professionals 174 might result in an overestimation or underestimation of mental ill health in the autistic population 173 . Some autistic characteristics might overshadow indicators of mental health conditions (for example, social withdrawal and sleep disturbance are common to both autism and depression), suggesting that co-occurring mental health conditions might go unrecognized 173 , 175 . Similarly, mental health diagnoses might overshadow an autism diagnosis, resulting in misdiagnosis 175 .

Mental health difficulties in autistic adults are likely to be compounded by the inadequacies of formal and informal supports. Autistic adults report a significantly higher number of unmet support needs than the general population 25 , struggle to obtain appropriate post-diagnostic support 176 and face challenges in accessing individually tailored treatment for mental health problems 25 , 176 . As one autistic adult put it: “I haven’t requested any, because people like me don’t get support” 25 . There is a clear need for mental health interventions that are adapted to autistic people’s needs and preferences 176 .

Practical reason

The next capability, practical reason, is defined as “being able to form a conception of the good and to engage in critical reflection about the planning of one’s own life” 17 . The three key elements of this capability — choosing what one wants to do, critically reflecting on that choice and making a plan to realize it — are fundamental to making full use of all the other capabilities.

It is sometimes assumed that people with cognitive disability, including some autistic people, are incapable of practical reason, failing even at the initial task of deciding what it is that they value or desire 177 . Autistic people were traditionally thought to have impaired self-awareness 178 . A substantial minority of autistic adults have co-occurring intellectual disability (29% 179 ) and some do not use speech to communicate 180 , which can make it difficult for others to gain insight into their thinking. However, research demonstrates that autistic people have a deep capacity to reflect on many aspects of the self, regardless of their intellect or communication preferences 181 , 182 .

The practical reason capability also requires people to be able to reflect critically on their choices, and to change their mind. Here, it seems that autistic people might approach decision-making differently to non-autistic people 183 , 184 . Autistic adults make more logically consistent, rational decisions 185 , are more circumspect in their decision-making, sample more information prior to making a decision 186 , are less susceptible to social influence 187 and are more deliberative in their reasoning 188 , 189 .

However, first-hand accounts suggest that such an approach to decision-making can have its disadvantages. For example, autistic people report challenges changing their decisions, especially if the change is unanticipated or requires a shift in routine 190 . Indeed, autistic people’s tendency to focus intensely on topics or objects of interests ( monotropism ) 191 can make it difficult to ‘move on’ or ‘change gears’ 192 . Interrupting activities after such states of flow and difficulties starting new activities (autistic inertia) can lead to pervasive and often debilitating effects on autistic adults 192 , including on their ability to design and execute a plan.

Many of the above skills come under the broader umbrella of executive function (higher-order processes that underpin goal-directed activity and enable individuals to respond flexibly to change and plan their actions accordingly) 193 . Problems with planning, organization and future-oriented thinking are common in autistic adults 189 , are linked to adaptive difficulties 194 , 195 , might be compounded by particular contexts (such as in parenting 196 or the workplace 197 ) and are perceived to be real obstacles to achieving desired outcomes 198 . Interventions and supports that focus on planning and decision-making are scarce, but those that do exist are associated with gains in executive function-related behaviours in real-world settings 199 .

Affiliation

The next capability is “being able to live with and toward others, to recognise and show concern for other human beings, to engage in various forms of social interaction … and having the social bases of self-respect and nonhumiliation; being able to be treated as a dignified being whose worth is equal to that of others” 17 . Simply put, that the person is respected as a social being 17 . Prima facie this might be the capability in which autistic adults might be expected to be at the greatest disadvantage. After all, the term ‘autism’ comes from the Greek autos , meaning both ‘self’ and ‘by itself’, and autistic people are often described as preferring a life of self-isolation 163 . Dominant characterizations suggest that autistic people lack the motivation 200 and/or cognitive building blocks 201 for social interaction, which prevents them from establishing and maintaining the types of reciprocal relationships that are fundamental for this capability.

Research has repeatedly shown that autistic children and adolescents have fewer reciprocal friendships 202 , 203 , are often on the periphery of social networks 202 , 203 and spend less time with their friends outside school than their non-autistic counterparts 204 . Autistic adolescents also report a growing awareness of feeling different from others despite wanting to ‘fit in’ 205 , 206 , and frequently experience social exclusion and bullying 135 , which might exacerbate their challenges in making and keeping friends. These patterns persist into adulthood 207 . It is therefore unsurprising that many interventions in adolescence and early adulthood focus on formal social skills training 208 , 209 , with the aim of equipping autistic people to manage everyday social relationships on their own terms and, thereby, secure this capability.

However, such interventions fail to appreciate that autistic sociality is shaped by the sociocultural context in which people are embedded 208 , 210 , 211 . Autistic people can and do have fulfilling connections with others, even if negotiating those relationships can be challenging 93 . They are drawn to those who accept them for who they are 154 , 159 , 161 and with whom they do not have to mask their autistic ways 212 , 213 . These friendships include (but are not restricted to) autistic-to-autistic interactions 214 , 215 . As one participant reported in a study on autistic adults’ experiences of loneliness and social relationships: “though many of us have only met each other three to four times, it feels as if we have known each other forever. Because all of a sudden you are in a community with someone where you are on the same wavelength … it is a really strong experience” 216 . Such autistic-to-autistic interactions promote self-understanding 181 , 214 , 217 , positive self-identity 217 , 218 and well-being 219 .

Isolation owing to the COVID-19 pandemic has also revealed that autistic people long for social connection in the same way as everyone else, both in terms of close, trusting relationships and fleeting, incidental interactions. As one autistic interviewee said when describing their lockdown experience: “I didn’t realise how important that incidental human contact was to me. It was so incidental that it never really registered on my radar until it was gone” 167 . Autistic people’s need for human connection and the extent to which social isolation plays a role in autistic people’s mental health distress have been underestimated by conventional accounts.

The double empathy problem 220 suggests that there is a misalignment between the minds of autistic and non-autistic people. This misalignment leads to a lack of reciprocity in cross-neurotype interactions and is the source of social communication difficulties between autistic and non-autistic people 221 , 222 . Empirical evidence suggests that non-autistic people have difficulties understanding the minds and behaviours of autistic people 221 , 222 , and that they are unwilling to interact with autistic people on the basis of initial judgements or interactions 221 , 222 , 223 . Thus, non-autistic people also interact less successfully with autistic people, compared with other non-autistic people 224 .

These cross-neurotype interaction difficulties can lead to stereotyping of and discrimination against autistic people. Although non-autistic people tend to deny feeling negatively inclined towards autistic people 225 , autistic people often report experiencing bullying, exclusion and discrimination. Attitudinal research has shown that considerable implicit biases are present, even among non-autistic people who report no explicit biases 226 , suggesting they may be unaware that they have negative attitudes towards autistic people. These implicit, negative biases are likely to be difficult to shift using short-term educational training programmes 227 . Such discrimination and stigma constitute a substantial barrier for autistic people seeking to develop social connections. Discrimination and stigma could be countered by widespread public acceptance campaigns (including those developed with autistic people 228 ), and programmes that increase the number of everyday interactions between autistic and non-autistic people 229 , 230 .

Other species

The eighth capability requires that humans are “able to live with concern for and in relation to animals, plants and the world of nature” 17 . Prominent autistic naturalists (such as Temple Grandin) and environmentalists (such as Greta Thunberg) have captured the public’s attention 231 . Yet there is remarkably little written about autistic people’s connections to nature and non-human animals.

Research with parents of autistic children has revealed that natural elements (such as sand, mud, leaves, twigs and water) can keep children engrossed for extended periods of time 232 . Some autistic children also prefer interacting with animals over inanimate objects and humans 233 , and report strong attachments to pets 234 . Studies have therefore focused on the potential therapeutic benefits of interacting with nature for children, with some purporting to show ‘reduced autistic severity’ or improvements in family functioning following interaction with trained animals 235 .

Research with autistic adults also reveals benefits of interacting with animals and nature 236 . Nature and gardening are two of the interests most reported by autistic adults, particularly women, and the pursuit of these interests is positively associated with subjective well-being 237 . In a study using photovoice methodology , images of natural scenes were frequently included among the photographs shared by autistic adults, demonstrating the importance of nature in contributing to a good autistic life 238 . Autistic adults’ autobiographies reveal the emotional depth of these connections to nature 239 , which some autistic people say offer respite from the intensity of an often inhospitable social world.

The capability of play emphasizes the right to be “able to laugh, to play, to enjoy recreational activities” 17 . This capability is one in which autistic adults might excel. Researchers and clinicians often refer to autistic people’s passions and interests as ‘highly restricted’, ‘perseverative’ or ‘circumscribed’, or as ‘obsessions’ or ‘fixations’, and as differing qualitatively (in content) and quantitatively (in intensity) from the interests of non-autistic people 240 . Yet autistic testimony attests that these passions are often a great source of joy and enjoyment 241 , which situates them within the play capability. Intense interests are common in autistic people 237 , 242 and become more diverse over time 243 . They are not limited to the sciences or computers, as popular stereotypes suggest 244 , but extend broadly to a range of areas 237 , 242 and might be more idiosyncratic in autistic adults with limited spoken language and/or intellectual disabilities 245 .

Autistic adults often view their capacity to pursue their passions as an advantage 181 , 237 , 241 , 246 that can be affirming and have positive implications for identity and self-concept 243 . Indeed, one autistic participant, who once “owned about 15,000 CDs,” celebrated the capacity “to be intense in stuff” 181 . Passions and interests have been likened to experiences of flow 237 , 247 and to monotropism 191 , which are driven by intrinsic (interest and knowledge) rather than extrinsic (prestige or achievement) motivation 237 . Finding others who share similar interests can form the basis of long-lasting friendships 93 . Nevertheless, exceptionally high intensity of engagement may, in some circumstances, negatively impact well-being 237 .

The generally positive effects of engaging in one’s interests also extend to taking part in recreational activities. Autistic adults report relatively high levels of weekly participation in exercise and hobbies 248 . However, they participate in conventional social and recreational activities to a lesser extent than the general population 249 , despite saying these are important to them 250 . Future research should consider the possible reasons for this disparity and the constraints that autistic adults face when engaging in meaningful and satisfying leisure activities. Inaccessible and inhospitable environments might be barriers for autistic adults 251 , and the effectiveness of programmes designed to support such participation appear to be limited 251 , 252 . Enhancing the play capability is important because engaging in recreational activities might buffer the relationship between perceived stress and quality of life 253 .

Control over one’s environment

The final capability emphasizes the importance of “being able to participate effectively in political choices that govern one’s life … being able to hold property and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure” 17 .

There is virtually no research on autistic adults’ engagement in mainstream political processes. Individuals with intellectual disability are less likely to vote than the general population 254 , especially if they live in supported accommodation rather than with family 255 . They often lack support and accessible information for political engagement 255 , 256 and are even explicitly told they cannot vote due to their intellectual disability 256 . More research is needed on autistic citizenship to identify precisely how these obstacles can be overcome 256 .

Extant data suggest that autistic people might be more politically disengaged than non-autistic people. This suggestion stands in contrast to high-profile autistic activists and political commentators, such as Australia’s Grace Tame and Eric Garcia from the United States, and increasing autistic involvement in self-advocacy since the 1990s. The autistic self-advocacy movement grew out of the self-advocacy efforts of people with intellectual and developmental disabilities in the United States and the United Kingdom 257 , and is perhaps epitomized most by Jim Sinclair’s 258 foundational essay (‘Don’t Mourn For Us’) which implored parents not to see their autistic child as a tragedy but, instead, to embrace their differences. Autistic and neurodiversity activists now promote individual self-advocacy, harnessing self-understanding and knowledge to ensure that individuals have greater control over their own lives. Such individual self-advocacy is complemented by collective advocacy, sometimes led by organizations run by and for autistic people (for example, Autistic Self-Advocacy Network ), where autistic people collectively campaign on a range of issues 259 , 260 and come together in dedicated autistic spaces and events 261 . Consequently, self-advocates have begun to shift conceptions of autism from a disorder that needs to be eradicated, prevented or ‘fixed’ to a distinct way of being, which demands acceptance and emphasizes human rights and a positive autistic identity and culture 261 , 262 , 263 , 264 , 265 , 266 , 267 .

There is much for autistic self-advocates to campaign about. Autistic people’s opportunities are constrained by others’ unjustified assumptions about their capacity 268 . Autistic adults are at far greater risk of prejudice, stigmatization and discrimination in many facets of their lives, such as education 141 , 269 , health 40 , 72 , care 270 , intimate relationships 271 , community 171 , justice 272 and work 273 . Moreover, to navigate a world that is not typically set up for them, autistic adults often (consciously or unconsciously) hide or mask aspects of their autistic self 274 , 275 to keep themselves safe or adjust their abilities through ‘compensation’ 276 . Such adaptation can come at serious personal cost, including poor mental and physical health 277 , 278 , negative self-perceptions 275 , 278 and autistic burnout 279 , 280 .

Work provides a particularly constrained environment. Autistic people face substantial challenges in gaining and sustaining meaningful employment, even relative to other disabled people 281 , 282 , 283 , despite possessing a range of skills that might be prized by employers 127 , 246 , 282 , 283 . Autistic adults who do obtain employment are often in positions that fail to match up with their abilities (malemployment) or for which they are overqualified (underemployment) 284 . They can also face challenges maintaining employment 285 , owing to inhospitable work environments 286 , negative experiences with (and sometimes bullying by) colleagues 281 , failure to have their needs and preferences met 287 , and experiences of discrimination, including following the disclosure of an autism diagnosis 288 . There is growing interest in paid short-term autism-specific employment programmes or internships, which are designed to reduce barriers to employment for autistic jobseekers, introduce them to workplace life and provide training in job-relevant skills 289 , 290 . These initiatives show promising effects on autistic trainees’ occupational self-efficacy 289 , 290 but deserve sustained attention to determine whether they help autistic adults to secure and maintain suitable employment in the longer term. Research is also needed on what constitutes a successful employment outcome according to autistic people themselves, and how it should be measured 291 .

Summary and future directions

Autistic people deserve to live long, healthy and creative lives of their own design. Just like all people, they need to be equipped with a set of fundamental capabilities to do so. In this Review, we have examined the lives and life chances of autistic adults through Nussbaum’s capabilities 16 , 17 lens. Doing so allows us to escape the narrowly normative focus on specific life outcomes and to consider the broader foundations for a range of possible good autistic lives. When approached in this way, the literature suggests that there are some capabilities in which autistic people have the potential to excel despite conventional stereotypes to the contrary, such as emotions, affiliation, play, connections to other species, practical reason and control over one’s own environment. At the same time, the literature suggests that in these capability areas and others (especially life, bodily health and integrity), autistic adults are often constrained by a range of social, economic and other environmental disadvantages and barriers, which prohibit them from enjoying a good life that they have the right to expect.

This Review suggests two clear directions for future research. First, it will be important for researchers to more clearly identify these externally shaped disadvantages and find ways to alleviate them. That is, once researchers are collectively equipped with a fuller understanding of what currently prevents autistic adults from enjoying a particular capability, they should be able to begin the task of removing those constraints so that further opportunities are provided. Second, it will be equally important to encourage autistic people themselves to reflect further on the capabilities to which they aspire and the obstacles which they believe obstruct them. The capabilities reviewed here are only a starting point and further amendment might be needed to capture the breadth and specificity of autistic experience (see ref. 292 ). Determining what autistic capabilities to add to this list can be resolved only through research that is genuinely participatory (see Box  3 ); that is, research that places the interests of autistic adults first and takes their own experience and expertise as seriously as any other input.

Box 3 New agendas and approaches to autism research

Despite the large literature on autism since it was first identified in the 1940s, this research generally does not have a positive, meaningful impact on the day-to-day lives of autistic people and their allies. There has been an extensive focus on underlying biological questions and relatively little research on the design of services and supports, the social contexts within which autistic people live or the policy settings that influence their quality of life. Through advocacy and other means, autistic people are increasingly making it clear that they are dissatisfied with this mix and, in line with the emphases of the capabilities approach, want the massive public investment in autism research to provide a greater direct return 305 . They want to address the imbalance in current autism research: research that has a direct impact on the daily lives of autistic people should be valued as much as research on the underlying biology and causes of autism 306 .

Crucially, autistic people also want to have greater input into research decisions 307 , 308 , 309 . Autism research has traditionally been designed and conducted by non-autistic people. Autistic people, their family members and even practitioners have rarely been involved in the decision-making processes that shape research and its application 12 , 13 , beyond being passive research participants. This limited involvement in research has begun to change in the past decade. There is a slow but growing movement towards collaborating with autistic people and their allies as part of the research process, such that autistic researchers and community members are actively involved in making decisions about research 308 , 309 . These decisions can include what kind of research is done, how it is done, how research results are interpreted and how the findings are used.

Such participatory research has a long history outside autism research 310 . In these contexts, participatory processes that draw on the ‘practical wisdom’ of non-scientists have been shown to have a dramatic effect on both the research agenda and the effectiveness of the research 311 . Participation itself can take many forms, ranging from being a consultant on a research project to sitting on a formal advisory board, being a full collaborative partner or even leading projects. The critical issue in participatory research is who makes the research decisions. In research involving community members only to a minimal extent (for example, through consultation), the researchers are typically in control. When that involvement deepens, researchers relinquish control to share decision-making power with community members.

There are some excellent examples of autism research that uses participatory approaches 40 , 181 , 312 , 313 , but it is still very much in its infancy. Although there is much enthusiasm for involving autistic people in the decisions that influence them 314 , 315 , researchers can be worried about how time-consuming participatory research can be, can find it hard to relinquish control in research decision-making and worry that community members might introduce bias into otherwise rigorous research processes. These concerns could lead to tokenism when community involvement is attempted 312 . Instead, researchers and community members need to appreciate that they each have different ‘experiential expertise’ 316 ; they must take that expertise seriously to enable valuable insights for those involved in the research and for the research itself 317 .

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Acknowledgements

The authors thank L. Crane, J. Lowe and D. Tan for their extremely helpful comments on a previous version of this manuscript. This work has been funded through an Australian Research Council Future Fellowship awarded to E.P. (FT190100077). The views expressed are the views of the authors alone and do not necessarily represent the views of their organizations or funding sources.

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Elizabeth Pellicano, Unsa Fatima, Gabrielle Hall, Melanie Heyworth, Wenn Lawson, Rozanna Lilley & Joanne Mahony

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Contributions

This Review was a collaboration between non-autistic researchers (E.P., U.F., R.L. and M.S.) and autistic researchers (G.H., M.H., W.L. and J.M.), who all actively participated in making decisions about the Review. E.P. and M.S. identified the theoretical framework in discussion with U.F., G.H., M.H., W.L., R.L. and J.M.; E.P., U.F., G.H., M.H., W.L., R.L. and J.M. identified the search terms; U.F. and E.P. conducted the literature searches. All authors identified areas of interest from across and within the capabilities and read and reflected on the existing literature in those areas, focusing in particular on the aspects of relevant papers that were least and most compelling and the next steps for research. E.P. and M.S. wrote the original draft of the manuscript. All authors contributed to reviewing and editing the manuscript. The analytic approach was informed by the authors’ training in education (E.P., U.F. and R.L.), psychology (E.P. and W.L.), anthropology (R.L.), nursing (G.H.), history (J.M.) and political philosophy (M.S.), as well as positionalities as autistic researchers and advocates (G.H., M.H., W.L. and J.M.). These participatory processes ensured that the Review was approached through a strengths-based, rather than deficits-based, lens.

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Correspondence to Elizabeth Pellicano .

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Competing interests.

E.P. reports grants from the Australian Government Department of Education, Skills and Employment, the Australian Research Council, Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program, Australia’s National Health and Medical Research Council, Australia’s Cooperative Research Centre for Living with Autism (Autism CRC) and Simons Foundation Autism Research Initiative, and has received honoraria for invited talks from the International Society for Autism Research and Aspect Australia. G.H. reports grants from the Australian Government Department of Education, Skills and Employment, and sits on the Board of Directors for Amaze, the peak organization for autistic people and their families in Victoria, Australia, and the Disability Advisory Council for Australia’s Victorian State Government, for which she receives meeting attendance payments. M.H. is CEO of the not-for-profit organization Reframing Autism Ltd and co-chair of the Australasian Autism Research Council (unremunerated), and reports grants from the Australian Government Department of Education, Skills and Employment, and Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program. W.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. He is a member of the Australasian Autism Research Council (unremunerated), a participant and advisor for Autism CRC and an ambassador for the I CAN Network, and receives royalties from books and occasional fees for workshop and invited addresses. R.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. M.S. reports grants from the Paul Ramsay Foundation and from the University of Sydney, is an Associate Fellow at the Said Business School, Oxford and assists fundraising efforts with various philanthropic groups in his role as Director of the UCL Policy Lab. All other authors declare no competing interests.

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A term used by autistic people to describe a state caused by excessive sensory or social stimulation.

A state that occurs when a person’s sensory system becomes overwhelmed, possibly owing to difficulties processing and integrating perceptual information, causing significant distress.

When a person accepts negative stereotypes about autism and applies them to themselves.

A cognitive theory of autism, which suggests that the primary feature of autism is a tendency for a singular attentional focus.

An optimal state in which a person becomes fully immersed in an activity, resulting in intense concentration, creative engagement and the loss of awareness of time and self.

A qualitative research methodology in which participants take photographs to illustrate, and possibly prompt discussion of, their experiences.

A community-driven term describing a highly debilitating condition involving exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits.

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Pellicano, E., Fatima, U., Hall, G. et al. A capabilities approach to understanding and supporting autistic adulthood. Nat Rev Psychol 1 , 624–639 (2022). https://doi.org/10.1038/s44159-022-00099-z

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What is the capability approach?

2007, Journal of Socio-economics

The paper specifies the core elements of Amartya Sen's capability approach to socio-economic valuation. It analyzes recent formulations by some of Sen's close associates, in addition to his own work, and identifies important variants, obscurities and tensions, as well as the key rationale and value-added of the approach. The approach is placed within a system of partner discourses, notably the broader ‘human development’ approach. The paper then shows issues faced in operationalization, and dangers that overly vague specification of the approach's rationale and commitments could lead to questionable choices in practical use.

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The goal of this paper is to provide a preliminary overview of empirical Capability Approach (CA) applications for high-income OECD countries. The survey aims at a basis of mutual exchange on relevant CA issues among researchers analyzing well-being in affluent countries. It focuses on CA applications related to general well-being, inequalities, poverty and human development in affluent countries. Based on this literature survey and an illustration of procedures and challenges of selecting relevant dimensions and referring to ongoing projects commissioned by the German and British government, the authors conclude that a stronger emphasis should be on assessing capabilities, autonomy, agency and responsibility.

Ingrid Robeyns

This book manuscript is aimed as a graduate-level introduction to the capability approach. It aims to give a general account (what I call "the modular view") of the capability approach, as well as offers a number of clarifications, as well as addressed and adds a number of critiques on the capability approach.

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Journal of Human Development and Capabilities: A Multi-Disciplinary Journal for People-Centered Development

Alejandra Boni , Des Gasper

The paper discusses the relevance of the human development and capability approach for development project planning, management and evaluation. With reference to the set of five other studies that it introduces, it suggests in which areas insights from human development-and-capability thinking offer advances and in which areas such thinking needs to link with and be complemented or corrected by thinking from other sources and traditions. The paper aims at capturing the learning from recent experiences and studies, both for project planning and for the human capabilities perspective.

This paper offers a critique of Martha Nussbaum’s description of the capability approach, and offers an alternative. I will argue that Nussbaum’s characterization of the capability approach is flawed, in two ways. First, she unduly limits the capability to two strands of work, thereby ignoring important other capabilitarian scholarship. Second, she argues that there are five essential elements that all capability theories meet; yet upon closer analysis three of them are not really essential to the capability approach. I also offer an alternative description of the capability approach, which is called the cartwheel view of the capability approach. This view is at the same time radically multidisciplinary yet also contains a foundationally robust core among its various usages, and is therefore much better able to make the case that the capability approach can be developed in a very wide range of more specific normative theories. Finally, the cartwheel view is used to argue against Nussbaum's claim that all capabilitarian political theory needs to be politically liberal.

in J. Dydryk and L. Keleher (eds.), Routledge Handbook of Development Ethics, Routledge

Oscar Garza-Vázquez

Development processes are inherently normative. They always involve ethical judgments about what constitutes ‘good’ or ‘desirable’ change. Because ethical judgements are concerned about what should be done, laying bare the normative judgments at play, discussing what counts as development and how it can be assessed is key to designing, evaluating, and legitimising public policies. This chapter offers an overview of the capability approach, one of the most important conceptual frameworks that has contributed to this ethical debate, and compares it to other evaluative perspectives used in development policy. We discuss why a capability view of development provides the most compelling ethical framework to date for dealing with the practical and normative questions that development processes raise. We present the approach as an interdisciplinary evaluative framework which views concerns for wellbeing, equity, rights, agency and participation, freedom and justice as central to the theory and practice of development. The chapter concludes by highlighting some controversies within the capability approach and important new directions.

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This book demonstrates how the capability approach to human development can contribute to the realisation of the 2015 United Nations Sustainable Development Goals (SDGs). The capability approach dictates that success should not be measured by economic indicators but by people leading meaningful, free, fulfilled, happy, or satisfied lives. Drawing from a range of disciplinary perspectives, this book argues that it is vital that the focus for the SDGs should shift to benefiting the most vulnerable. Case studies from across Asia, Africa, Latin America (Global South), and the United States, the United Kingdom, and Australia (Global North) consider how the capability approach can contribute as a practical framework to achieving the SDGs’ ambitions for social, economic, political, and legal progress. Drawing on insights from a range of disciplines, this book will be of interest to researchers and practitioners from the fields of law, politics, international relations, criminology, international development, sociology, public policy, area studies, and others.

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Brian Vincent Ikejiaku gained his PhD from Keele University, UK, where he was a Dandelion Scholar. He is Senior Fellow of the Higher Education Academy, UK; he has taught in different UK Universities including Coventry University where he was Director of PG Law programme, University of Bradford, where he was Director of Research and PGR Coordinator, and currently with the Birmingham City University (BCU), when this work was published. He is an interdisciplinary scholar and one of the global leading scholars/experts in the field of International and Global Law (particularly international development law, and international law, international human rights, sustainable development law, and social justice). He is Editorial Member of the International Journal of Law and Society . His research cuts across law, politics/international relations, international development, and business. His work has gained impact with the UNESCO, ADB, LDi, and others. He is a Lifetime Fellow Member of International Society for Development and Sustainability (ISDS).

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Companies looking to score early wins with gen AI should move quickly. But those hoping that gen AI offers a shortcut past the tough—and necessary—organizational surgery are likely to meet with disappointing results. Launching pilots is (relatively) easy; getting pilots to scale and create meaningful value is hard because they require a broad set of changes to the way work actually gets done.

Let’s briefly look at what this has meant for one Pacific region telecommunications company. The company hired a chief data and AI officer with a mandate to “enable the organization to create value with data and AI.” The chief data and AI officer worked with the business to develop the strategic vision and implement the road map for the use cases. After a scan of domains (that is, customer journeys or functions) and use case opportunities across the enterprise, leadership prioritized the home-servicing/maintenance domain to pilot and then scale as part of a larger sequencing of initiatives. They targeted, in particular, the development of a gen AI tool to help dispatchers and service operators better predict the types of calls and parts needed when servicing homes.

Leadership put in place cross-functional product teams with shared objectives and incentives to build the gen AI tool. As part of an effort to upskill the entire enterprise to better work with data and gen AI tools, they also set up a data and AI academy, which the dispatchers and service operators enrolled in as part of their training. To provide the technology and data underpinnings for gen AI, the chief data and AI officer also selected a large language model (LLM) and cloud provider that could meet the needs of the domain as well as serve other parts of the enterprise. The chief data and AI officer also oversaw the implementation of a data architecture so that the clean and reliable data (including service histories and inventory databases) needed to build the gen AI tool could be delivered quickly and responsibly.

Creating value beyond the hype

Let’s deliver on the promise of technology from strategy to scale.

Our book Rewired: The McKinsey Guide to Outcompeting in the Age of Digital and AI (Wiley, June 2023) provides a detailed manual on the six capabilities needed to deliver the kind of broad change that harnesses digital and AI technology. In this article, we will explore how to extend each of those capabilities to implement a successful gen AI program at scale. While recognizing that these are still early days and that there is much more to learn, our experience has shown that breaking open the gen AI opportunity requires companies to rewire how they work in the following ways.

Figure out where gen AI copilots can give you a real competitive advantage

The broad excitement around gen AI and its relative ease of use has led to a burst of experimentation across organizations. Most of these initiatives, however, won’t generate a competitive advantage. One bank, for example, bought tens of thousands of GitHub Copilot licenses, but since it didn’t have a clear sense of how to work with the technology, progress was slow. Another unfocused effort we often see is when companies move to incorporate gen AI into their customer service capabilities. Customer service is a commodity capability, not part of the core business, for most companies. While gen AI might help with productivity in such cases, it won’t create a competitive advantage.

To create competitive advantage, companies should first understand the difference between being a “taker” (a user of available tools, often via APIs and subscription services), a “shaper” (an integrator of available models with proprietary data), and a “maker” (a builder of LLMs). For now, the maker approach is too expensive for most companies, so the sweet spot for businesses is implementing a taker model for productivity improvements while building shaper applications for competitive advantage.

Much of gen AI’s near-term value is closely tied to its ability to help people do their current jobs better. In this way, gen AI tools act as copilots that work side by side with an employee, creating an initial block of code that a developer can adapt, for example, or drafting a requisition order for a new part that a maintenance worker in the field can review and submit (see sidebar “Copilot examples across three generative AI archetypes”). This means companies should be focusing on where copilot technology can have the biggest impact on their priority programs.

Copilot examples across three generative AI archetypes

• “Taker” copilots help real estate customers sift through property options and find the most promising one, write code for a developer, and summarize investor transcripts.
• “Shaper” copilots provide recommendations to sales reps for upselling customers by connecting generative AI tools to customer relationship management systems, financial systems, and customer behavior histories; create virtual assistants to personalize treatments for patients; and recommend solutions for maintenance workers based on historical data.
• “Maker” copilots are foundation models that lab scientists at pharmaceutical companies can use to find and test new and better drugs more quickly.

Some industrial companies, for example, have identified maintenance as a critical domain for their business. Reviewing maintenance reports and spending time with workers on the front lines can help determine where a gen AI copilot could make a big difference, such as in identifying issues with equipment failures quickly and early on. A gen AI copilot can also help identify root causes of truck breakdowns and recommend resolutions much more quickly than usual, as well as act as an ongoing source for best practices or standard operating procedures.

The challenge with copilots is figuring out how to generate revenue from increased productivity. In the case of customer service centers, for example, companies can stop recruiting new agents and use attrition to potentially achieve real financial gains. Defining the plans for how to generate revenue from the increased productivity up front, therefore, is crucial to capturing the value.

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Upskill the talent you have but be clear about the gen-AI-specific skills you need

By now, most companies have a decent understanding of the technical gen AI skills they need, such as model fine-tuning, vector database administration, prompt engineering, and context engineering. In many cases, these are skills that you can train your existing workforce to develop. Those with existing AI and machine learning (ML) capabilities have a strong head start. Data engineers, for example, can learn multimodal processing and vector database management, MLOps (ML operations) engineers can extend their skills to LLMOps (LLM operations), and data scientists can develop prompt engineering, bias detection, and fine-tuning skills.

A sample of new generative AI skills needed

The following are examples of new skills needed for the successful deployment of generative AI tools:

• data scientist:
• prompt engineering
• in-context learning
• bias detection
• pattern identification
• reinforcement learning from human feedback
• hyperparameter/large language model fine-tuning; transfer learning
• data engineer:
• data wrangling and data warehousing
• data pipeline construction
• multimodal processing
• vector database management

The learning process can take two to three months to get to a decent level of competence because of the complexities in learning what various LLMs can and can’t do and how best to use them. The coders need to gain experience building software, testing, and validating answers, for example. It took one financial-services company three months to train its best data scientists to a high level of competence. While courses and documentation are available—many LLM providers have boot camps for developers—we have found that the most effective way to build capabilities at scale is through apprenticeship, training people to then train others, and building communities of practitioners. Rotating experts through teams to train others, scheduling regular sessions for people to share learnings, and hosting biweekly documentation review sessions are practices that have proven successful in building communities of practitioners (see sidebar “A sample of new generative AI skills needed”).

It’s important to bear in mind that successful gen AI skills are about more than coding proficiency. Our experience in developing our own gen AI platform, Lilli , showed us that the best gen AI technical talent has design skills to uncover where to focus solutions, contextual understanding to ensure the most relevant and high-quality answers are generated, collaboration skills to work well with knowledge experts (to test and validate answers and develop an appropriate curation approach), strong forensic skills to figure out causes of breakdowns (is the issue the data, the interpretation of the user’s intent, the quality of metadata on embeddings, or something else?), and anticipation skills to conceive of and plan for possible outcomes and to put the right kind of tracking into their code. A pure coder who doesn’t intrinsically have these skills may not be as useful a team member.

While current upskilling is largely based on a “learn on the job” approach, we see a rapid market emerging for people who have learned these skills over the past year. That skill growth is moving quickly. GitHub reported that developers were working on gen AI projects “in big numbers,” and that 65,000 public gen AI projects were created on its platform in 2023—a jump of almost 250 percent over the previous year. If your company is just starting its gen AI journey, you could consider hiring two or three senior engineers who have built a gen AI shaper product for their companies. This could greatly accelerate your efforts.

Form a centralized team to establish standards that enable responsible scaling

To ensure that all parts of the business can scale gen AI capabilities, centralizing competencies is a natural first move. The critical focus for this central team will be to develop and put in place protocols and standards to support scale, ensuring that teams can access models while also minimizing risk and containing costs. The team’s work could include, for example, procuring models and prescribing ways to access them, developing standards for data readiness, setting up approved prompt libraries, and allocating resources.

While developing Lilli, our team had its mind on scale when it created an open plug-in architecture and setting standards for how APIs should function and be built.  They developed standardized tooling and infrastructure where teams could securely experiment and access a GPT LLM , a gateway with preapproved APIs that teams could access, and a self-serve developer portal. Our goal is that this approach, over time, can help shift “Lilli as a product” (that a handful of teams use to build specific solutions) to “Lilli as a platform” (that teams across the enterprise can access to build other products).

For teams developing gen AI solutions, squad composition will be similar to AI teams but with data engineers and data scientists with gen AI experience and more contributors from risk management, compliance, and legal functions. The general idea of staffing squads with resources that are federated from the different expertise areas will not change, but the skill composition of a gen-AI-intensive squad will.

Set up the technology architecture to scale

Building a gen AI model is often relatively straightforward, but making it fully operational at scale is a different matter entirely. We’ve seen engineers build a basic chatbot in a week, but releasing a stable, accurate, and compliant version that scales can take four months. That’s why, our experience shows, the actual model costs may be less than 10 to 15 percent of the total costs of the solution.

Building for scale doesn’t mean building a new technology architecture. But it does mean focusing on a few core decisions that simplify and speed up processes without breaking the bank. Three such decisions stand out:

• Focus on reusing your technology. Reusing code can increase the development speed of gen AI use cases by 30 to 50 percent. One good approach is simply creating a source for approved tools, code, and components. A financial-services company, for example, created a library of production-grade tools, which had been approved by both the security and legal teams, and made them available in a library for teams to use. More important is taking the time to identify and build those capabilities that are common across the most priority use cases. The same financial-services company, for example, identified three components that could be reused for more than 100 identified use cases. By building those first, they were able to generate a significant portion of the code base for all the identified use cases—essentially giving every application a big head start.
• Focus the architecture on enabling efficient connections between gen AI models and internal systems. For gen AI models to work effectively in the shaper archetype, they need access to a business’s data and applications. Advances in integration and orchestration frameworks have significantly reduced the effort required to make those connections. But laying out what those integrations are and how to enable them is critical to ensure these models work efficiently and to avoid the complexity that creates technical debt  (the “tax” a company pays in terms of time and resources needed to redress existing technology issues). Chief information officers and chief technology officers can define reference architectures and integration standards for their organizations. Key elements should include a model hub, which contains trained and approved models that can be provisioned on demand; standard APIs that act as bridges connecting gen AI models to applications or data; and context management and caching, which speed up processing by providing models with relevant information from enterprise data sources.
• Build up your testing and quality assurance capabilities. Our own experience building Lilli taught us to prioritize testing over development. Our team invested in not only developing testing protocols for each stage of development but also aligning the entire team so that, for example, it was clear who specifically needed to sign off on each stage of the process. This slowed down initial development but sped up the overall delivery pace and quality by cutting back on errors and the time needed to fix mistakes.

Ensure data quality and focus on unstructured data to fuel your models

The ability of a business to generate and scale value from gen AI models will depend on how well it takes advantage of its own data. As with technology, targeted upgrades to existing data architecture  are needed to maximize the future strategic benefits of gen AI:

• Be targeted in ramping up your data quality and data augmentation efforts. While data quality has always been an important issue, the scale and scope of data that gen AI models can use—especially unstructured data—has made this issue much more consequential. For this reason, it’s critical to get the data foundations right, from clarifying decision rights to defining clear data processes to establishing taxonomies so models can access the data they need. The companies that do this well tie their data quality and augmentation efforts to the specific AI/gen AI application and use case—you don’t need this data foundation to extend to every corner of the enterprise. This could mean, for example, developing a new data repository for all equipment specifications and reported issues to better support maintenance copilot applications.
• Understand what value is locked into your unstructured data. Most organizations have traditionally focused their data efforts on structured data (values that can be organized in tables, such as prices and features). But the real value from LLMs comes from their ability to work with unstructured data (for example, PowerPoint slides, videos, and text). Companies can map out which unstructured data sources are most valuable and establish metadata tagging standards so models can process the data and teams can find what they need (tagging is particularly important to help companies remove data from models as well, if necessary). Be creative in thinking about data opportunities. Some companies, for example, are interviewing senior employees as they retire and feeding that captured institutional knowledge into an LLM to help improve their copilot performance.
• Optimize to lower costs at scale. There is often as much as a tenfold difference between what companies pay for data and what they could be paying if they optimized their data infrastructure and underlying costs. This issue often stems from companies scaling their proofs of concept without optimizing their data approach. Two costs generally stand out. One is storage costs arising from companies uploading terabytes of data into the cloud and wanting that data available 24/7. In practice, companies rarely need more than 10 percent of their data to have that level of availability, and accessing the rest over a 24- or 48-hour period is a much cheaper option. The other costs relate to computation with models that require on-call access to thousands of processors to run. This is especially the case when companies are building their own models (the maker archetype) but also when they are using pretrained models and running them with their own data and use cases (the shaper archetype). Companies could take a close look at how they can optimize computation costs on cloud platforms—for instance, putting some models in a queue to run when processors aren’t being used (such as when Americans go to bed and consumption of computing services like Netflix decreases) is a much cheaper option.

Build trust and reusability to drive adoption and scale

Because many people have concerns about gen AI, the bar on explaining how these tools work is much higher than for most solutions. People who use the tools want to know how they work, not just what they do. So it’s important to invest extra time and money to build trust by ensuring model accuracy and making it easy to check answers.

One insurance company, for example, created a gen AI tool to help manage claims. As part of the tool, it listed all the guardrails that had been put in place, and for each answer provided a link to the sentence or page of the relevant policy documents. The company also used an LLM to generate many variations of the same question to ensure answer consistency. These steps, among others, were critical to helping end users build trust in the tool.

Part of the training for maintenance teams using a gen AI tool should be to help them understand the limitations of models and how best to get the right answers. That includes teaching workers strategies to get to the best answer as fast as possible by starting with broad questions then narrowing them down. This provides the model with more context, and it also helps remove any bias of the people who might think they know the answer already. Having model interfaces that look and feel the same as existing tools also helps users feel less pressured to learn something new each time a new application is introduced.

Getting to scale means that businesses will need to stop building one-off solutions that are hard to use for other similar use cases. One global energy and materials company, for example, has established ease of reuse as a key requirement for all gen AI models, and has found in early iterations that 50 to 60 percent of its components can be reused. This means setting standards for developing gen AI assets (for example, prompts and context) that can be easily reused for other cases.

While many of the risk issues relating to gen AI are evolutions of discussions that were already brewing—for instance, data privacy, security, bias risk, job displacement, and intellectual property protection—gen AI has greatly expanded that risk landscape. Just 21 percent of companies reporting AI adoption say they have established policies governing employees’ use of gen AI technologies.

Similarly, a set of tests for AI/gen AI solutions should be established to demonstrate that data privacy, debiasing, and intellectual property protection are respected. Some organizations, in fact, are proposing to release models accompanied with documentation that details their performance characteristics. Documenting your decisions and rationales can be particularly helpful in conversations with regulators.

In some ways, this article is premature—so much is changing that we’ll likely have a profoundly different understanding of gen AI and its capabilities in a year’s time. But the core truths of finding value and driving change will still apply. How well companies have learned those lessons may largely determine how successful they’ll be in capturing that value.

The authors wish to thank Michael Chui, Juan Couto, Ben Ellencweig, Josh Gartner, Bryce Hall, Holger Harreis, Phil Hudelson, Suzana Iacob, Sid Kamath, Neerav Kingsland, Kitti Lakner, Robert Levin, Matej Macak, Lapo Mori, Alex Peluffo, Aldo Rosales, Erik Roth, Abdul Wahab Shaikh, and Stephen Xu for their contributions to this article.

This article was edited by Barr Seitz, an editorial director in the New York office.

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JSmol Viewer

Validation scores to evaluate the detection capability of sensor systems used for autonomous machines in outdoor environments.

1. Introduction

Objectives of the work, 2. an overview of environment perception for agricultural machinery, 2.1. standardization, 2.1.1. machine-related standards, 2.1.2. sensor-related standards, 2.2. approaches to evaluate the detection capability, 2.2.1. machine-related evaluation, 2.2.2. sensor-related evaluation, 2.3. methodology of real environment detection area (reda), 2.3.1. reda terminology.

• Object Detection Systems (ODS)
• Specified Detection Area (SDA)

2.3.2. Concept of REDA and REDAM

• Real Environment Detection Area (REDA)
• Real Environment Detection Area Matrix (REDAM)

2.3.3. REDA-Scores

• Detection Scores
• Expected detection;
• Unexpected detection;
• Unexpected non-detection;
• Expected non-detection.

3. Detection Capability in Agriculture Environment

3.1. challenges for the detection capability in agricultural environments, 3.1.1. high variance of possible objects, 3.1.2. constantly changing environment and concealments, 3.1.3. environment related influences, 3.2. terminology used to describe the detection capability, 3.2.1. detection goal, 3.2.2. detection information.

• Type of Perception
• Degree of Information Depth

3.2.3. Environment Noise

4. parameters of interest for real environment detection capability, 4.1. proposal for a parameter-based description of the environment, 4.2. parameter-based test designs.

• Isolated Real-World Situation
• Artificial Environment Noise
• Full Parameter Simulation

4.3. Safety Parameters for the Detection Capability

• Reliability
• Availability

4.4. Error Evaluation

4.4.1. systematic error evaluation.

• expected Specified Detection Area (eSDA)

4.4.2. Random Error Evaluation

• Tolerance Zone

5. Validation Scores of the Real Environment Detection Capability

5.1. classification for the parameter-based real environment detection capability.

• Outcome: Random error accounting REDA point cloud;
• Prediction: expected Specified Detection Area (eSDA).
• TP (True Positive): Expected Detection
• FP (False Positive): Unexpected Detection
• FN (False Negative): Unexpected non-detection
• TN (True Negative): Expected non-detection

5.2. Real Environment Detection Score (RED-Score)

• Reliability-Score
• Availability-Score
• Usability-Score

5.3. REDA-Database

6. conclusions.

‘A statement on the system-under-test ( test criteria ) that is expressed quantitatively ( metric ) under a set of specified conditions ( test scenario ) with the use of knowledge of an ideal result ( reference ).’

• Test criteria
• Test scenario

Author Contributions

Data availability statement, acknowledgments, conflicts of interest, abbreviations.

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Komesker, M.; Meltebrink, C.; Ebenhöch, S.; Zahner, Y.; Vlasic, M.; Stiene, S. Validation Scores to Evaluate the Detection Capability of Sensor Systems Used for Autonomous Machines in Outdoor Environments. Electronics 2024 , 13 , 2396. https://doi.org/10.3390/electronics13122396

Komesker M, Meltebrink C, Ebenhöch S, Zahner Y, Vlasic M, Stiene S. Validation Scores to Evaluate the Detection Capability of Sensor Systems Used for Autonomous Machines in Outdoor Environments. Electronics . 2024; 13(12):2396. https://doi.org/10.3390/electronics13122396

Komesker, Magnus, Christian Meltebrink, Stefan Ebenhöch, Yannick Zahner, Mirko Vlasic, and Stefan Stiene. 2024. "Validation Scores to Evaluate the Detection Capability of Sensor Systems Used for Autonomous Machines in Outdoor Environments" Electronics 13, no. 12: 2396. https://doi.org/10.3390/electronics13122396

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