Abstract
Autism and ADHD, two of the most common neurodevelopmental conditions, are defined by challenges in daily functioning but are also associated with strengths and can vary substantially in their manifestation across individuals. Yet, diagnostic criteria alone fail to capture their full complexity, particularly on the individual level. A holistic understanding of functioning requires moving beyond defining clinical features to consider the interaction between individual functioning and contextual influences. The International Classification of Functioning, Disability, and Health (ICF) provides a biopsychosocial framework where functioning is understood as the dynamic interplay between the individual's (dis)abilities and the contexts in which they occur. Previously, the ICF has been adapted for tailored use in autism and ADHD using Core Sets, but an important contextual component—personal factors—has been neglected. For a truly holistic understanding of autism and ADHD, including taking into account community perspectives, these personal factors cannot be disregarded. This protocol describes the multi-phase process that will be undertaken to identify and develop shortlists of personal factors most relevant to functioning in individuals diagnosed with autism and ADHD. These shortlists of personal factors will be added to the existing ICF CoreSets platform for autism and ADHD to support a more comprehensive and person-centered approach to autism and ADHD.
Background
Autism and Attention Deficit Hyperactivity Disorder (ADHD) are two common neurodevelopmental conditions (NDC's) (, ). Both are understood as arising from differences in early brain development that influence an individuals' cognitive capacities to comply with societal expectations and demands, leading to educational, occupational, and social challenges (, ). Clinical and social services, as well as schools and workplaces, are facing increasing demands to meet the needs of these populations and provide necessary supports (–). In the vast majority of service contexts, support for individuals diagnosed with autism and ADHD is primarily guided by diagnostic classification systems, such as the International Classification of Diseases [ICD-11; ()] and the Diagnostic and Statistical Manual of Mental Disorders [DSM-5-TR; ()]. While these diagnostic labels have advantages and can provide a useful starting point for understanding certain patterns of behaviour and functioning, an overreliance on diagnostic labels risks marginalizing individuals to a set of criteria and symptoms. Both autism and ADHD are characterized by substantial heterogeneity in how they manifest across individuals (). Individuals with the same diagnosis may have different lived experiences of the condition, shaped by their unique personal characteristics, life circumstances, co-occurring challenges, and interactions with their environment. A narrow focus on symptoms can obscure the broader contextual factors that influence everyday functioning, making it difficult to understand the specific challenges an individual faces and what support would be most meaningful to them. As a result, care systems often struggle to capture the complexity and individuality of people's lives, leading to fragmented communication, misaligned interventions, and missed opportunities for meaningful support ().
The neurodiversity paradigm is increasingly embraced by the community and offers an alternative perspective to traditional medical deficit-focused models, viewing autism and ADHD as natural variations of human cognition and behaviour, rather than disorders to be cured (). It reframes the phenotypes from pathology to variation, emphasizing that the challenges neurodivergent individuals face are often the result of mismatches between individual needs and their environments, rather than merely inherent deficits. This approach advocates for support systems that are tailored to individual strengths, needs, and preferences. Although the neurodiversity paradigm, as well as the urgency of adopting a holistic view of individuals within their unique contexts, is increasingly embraced in practice, the structural dominance of ICD and DSM-based frameworks in healthcare and support services continues to constrain the integration of more comprehensive, person-centered approaches into daily clinical practice (, –).
Recognizing the multifaceted nature of autism and ADHD is essential for developing tools, supports, and frameworks that are grounded in lived experience. The World Health Organization's (WHO) International Classification of Functioning, Disability and Health [ICF; ()] offers such a holistic framework. The ICF is based on a biopsychosocial model (), focusing on an individuals' functioning and disability in context, rather than on symptoms and diagnosis. It conceptualizes functioning as the dynamic interaction between body functions (i.e., physiological and mental functions of the body system), body structures (i.e., anatomical parts of the body), activities (i.e., execution of tasks), participation (i.e., involvement in life situations), and contextual factors (i.e., the conditions or circumstances that shape how an individual interacts with the world) (see Figure 1). The most comprehensive version of the ICF, the Children and Youth (ICF-CY) version, presents a total of 1,685 codes with graded levels of increasing detail (level 1–4; see Figure 2 for an example code structure) to operationalize the components of functioning and disability. It comprises 531 codes for body functions, 329 for body structures, 552 for activities and participation, and 273 for environmental factors. The biopsychosocial lens of the ICF allows for a more nuanced understanding of an individual's strengths and challenges, and the supports they may need, given their contextual circumstances (both personal and environmental). Rather than categorizing individuals based on impairments, the ICF emphasizes contextualized functioning, making it a powerful tool for guiding assessment and intervention selection, while at the same time, providing a taxonomy to systematically categorize functioning. Moreover, the ICF provides a shared language that bridges sectors such as health care, education, social services, and policy, facilitating interdisciplinary collaboration and more coherent support systems, which is essential for supporting individuals diagnosed with autism and ADHD ().
Figure 1
Figure 2
To facilitate the use of the ICF in practice, ICF Core Sets for autism and ADHD have been developed by our team in collaboration with WHO and the ICF Research Branch (, ). ICF Core Sets are a selection of ICF categories that are the most relevant for describing functioning in individuals in specific contexts or with specific health conditions (). Generally, Core Sets aim to include the minimum number of codes required, while still capturing all aspects necessary to describe functioning in individuals with a specific condition across the lifespan, regardless of sex or other potential moderators or mediators. Core Sets are developed through a comprehensive, multi-perspective research process. Since their publication, the autism and ADHD Core Sets have been validated and updated (, ), and operationalized and implemented into an online digital platform, the ICF CoreSets platform (, ). The Core Sets are increasingly applied in both research and practice (). Continued feedback from stakeholders, including individuals diagnosed with autism and ADHD, suggests that the Core Sets' comprehensive coverage of functioning domains, their ability to capture strengths and environmental impacts, and their recognition of individual uniqueness, irrespective of diagnosis, are valuable benefits of the Core Sets. However, feedback from stakeholders, along with scientific evidence and practical experience, also suggests that the Core Sets could be further improved to more fully reflect the complexity of functioning in autism and ADHD by adding factors such as personal desire, one's preferred lifestyle, or values (), which could potentially be covered by the personal factor component of the ICF.
Personal factors
Within the ICF framework, personal factors are acknowledged as an essential contextual component influencing an individual's functioning, alongside environmental factors (see Figure 1). The WHO states that personal factors capture:
“The particular background of an individual’s life and living, and comprise features of the individual that are not part of a health condition or health states. These factors may include gender, race, age, other health conditions, fitness, lifestyle, habits, upbringing, coping styles, social background, education, profession, past and current experience (past life events and concurrent events), overall behavior patterns and character style, individual psychological assets and other characteristics all or any of which may play a role in disability at any level” [(), p. 15].
There is broad consensus among researchers that personal factors are essential for understanding functioning, and that their consideration is fundamental to the biopsychosocial model underlying the ICF (). Despite their recognized importance, personal factors are not classified within the ICF due to large societal and cultural variance and a lack of clarity on the scope of these factors. They are therefore rarely systematically used and not currently captured in the Core Sets for autism and ADHD. Omission of personal factors in these Core Sets, however, limits the ability to fully capture the individuality and complexity of functioning, particularly in conditions such as autism and ADHD, where personal context plays a critical role. For instance, previous research has demonstrated that factors such as gender (), self-worth (, ), feeling of social acceptance (), and illness belief () significantly influence functional outcomes in individuals diagnosed with autism and ADHD.
Although personal factors are not yet formally classified within the ICF, the WHO recognizes their importance and has identified the development of a Personal Factor component as a future priority (). However, the necessity of developing a taxonomy for personal factors has been debated () and several ethical concerns have been raised. One concern is that classifying personal factors could be misused as a classification of the individuals themselves which is inconsistent with the ICF's underlying philosophy of classifying functioning rather than people. Additionally, it has been argued that assigning negative values to personal factors carries a risk of “blaming the victim”. In contrast, others have explored various conceptual approaches and proposed classification systems aimed at defining and structuring personal factors in a systematic and ethically informed way. A variety of conceptualizations and taxonomies for reporting personal factors have been proposed in diverse fields, including audiological rehabilitation (), motor neuron disease (), workplace settings (), and social medicine and rehabilitation (, ). See Table 1 for an overview of the known proposed personal factor structures. Although the categorizations greatly differ in regard to their background, and include theoretical approaches from different professional fields, they cover broadly similar content areas. Sociodemographic factors, behavioural patterns, lifestyle, and coping are commonly addressed (). One particular area where there seems to be variability across conceptualizations and categorizations of personal factors is in relation to subjectivity, and there is no broad consensus in this respect. On one hand, the ICF itself does not preclude entirely the examination of the subjective dimensions of functioning. The ICF linking rules developed by the WHO and ICF Research Branch include perspectives of appraisal (), considering the extent to which personal expectations and hopes have been achieved (e.g., satisfaction with sleep). On the other, the most frequently encountered perspectives captured by the ICF are descriptive (capturing the extent of the problem) or needs-based (the level of need/support required by an individual), which are ultimately more objective in nature. At the same time, many more subjective dimensions including general life satisfaction, beliefs, values, or preferences remain outside its scope. While there is increasing consensus that subjective information is essential for a comprehensive understanding of functioning, opinions diverge on whether this belongs within the personal factors domain (, –). Ueda and Okawa () emphasize the importance of the subjective dimension in the ICF but argue for a clear distinction, suggesting that personal factors are primarily objective contextual background variables (such as gender, age, social background, and lifestyle), whereas subjective experiences are intrinsic to functioning and disability and belong to a separate dimension. In contrast, Huber and colleagues () propose that personal factors should include subjective perceptions, including health-related quality of life, and highlight the reciprocal interactions between ICF components arguing that this way subjectivity is integrated within the whole framework. Also, in Geyh's conceptualization of personal factors, the subjective dimension is explicitly recognized; here personal factors are understood as reflecting the internal context of functioning in terms of individual facts, immediate subjective experience, and recurrent patterns of experience and behaviour ().
Table 1
| Author and year | Field | Personal factor categorization |
|---|---|---|
| Geyh et al. () | General (Spinal Cord Injury) |
|
| Grotkamp et al. () | Social Medicine and prevention |
|
| Heerkens et al. () | Work participation |
|
| Ng and Khan () | Motor neuron disease |
|
| Salvador-Carulla et al. ()* | Health-related behavior |
|
| Stephens and Kerr () | Audiological rehabilitation |
|
Overview of previously suggested conceptualizations and structures for ICF's personal factors.
Focuses specifically on the categorization of health-related habits (belonging to ICF's personal factor).
Based on the conceptualization of Geyh, Tsuda (), describes theoretical frameworks that could help identify personal factors and explains how the emotional and motivational aspects in goal pursuit could be captured by the personal factors in the field of rehabilitation. In rehabilitation, but also in mental health care, the focus of support is not only on recovering body functions but also on the individual's autonomy and quality of life. To enable better support for individuals in the long term, outside of the treatment context, it would be essential for practitioners to understand the personal and contextual factors and consider them in goal setting and goal pursuit. Recognizing these personal factors is also integral to person-centered care (), which prioritizes tailoring interventions to individuals' unique needs, values, preferences, and lifestyles (). By aligning care with these principles, person-centered approaches can foster greater satisfaction, engagement, and adherence to interventions and support, ultimately contributing to improved mental health outcomes ().
Previous attempts to conceptualize and categorize ICF personal factors have shown some consensus regarding their content. However, the exact scope remains difficult to define and often depends on the health condition being assessed. Personal factors clearly provide essential context for understanding an individual's functioning in daily life. The omission means neglecting half of the contextual component of the ICF, weakening the holistic and biopsychosocial nature of the framework. Alternatively, leaving the identification and documentation of personal factors to the assessor, as currently recommended by the WHO (), leads to inconsistent and variable assessment, undermining the goal of standardized and universally applicable functional evaluation (). For this reason, identifying personal factors relevant to functioning in autism and ADHD, based on a structured and scientific approach, and incorporating them into the existing ICF Core Sets, is necessary to facilitate truly holistic functional assessment and support, including taking into account community voices and experiences.
Current conceptual framework
Given the lack of clarity regarding the exact scope of personal factors within the ICF it is important to establish a clear conceptual framework for how personal factors are interpreted in this project. Personal factors are understood as individual characteristics or backgrounds that influence functioning but are not part of the health condition itself nor classified within other components of the ICF framework (i.e., body structure, body function, activity, participation, or environmental factors). We acknowledge that daily life functioning, including the role of personal factors, influences and overlaps broader domains such as mental health and quality of life. According to the WHO, mental health is defined as a state of well-being that enables individuals to cope with life's stresses, realize their abilities, and contribute to their communities. Quality of life is defined as an individual's perception of their position in life, shaped by cultural context, value systems, and personal goals. In this project, we examine personal factors in relation to daily life, including functioning, mental health, and quality of life, to avoid overlooking personal factors that may be essential for understanding functioning in individuals diagnosed with autism and/or ADHD. At this stage, we adopt a broad scope and do not impose further boundaries on the definition of personal factors and its outcomes. Although the ICF is explicitly transdiagnostic, the present study focuses on identifying personal factors that are relevant in the context of autism and ADHD. These personal factors should not be interpreted as disorder-specific traits, nor as an attempt to define a universal set of personal factors for inclusion in the ICF—a task that lies within the remit of the WHO-Family of International Classifications (FIC) Network. Rather, they are intended to make explicit those personal characteristics that meaningfully shape how individuals with autism and/or ADHD navigate life. By identifying such empirically grounded and practice-relevant personal factors, this study aims to support clinicians and individuals in translating a diagnostic classification into a more nuanced, individualized understanding of functioning and support needs within an ICF-oriented approach.
Aim
The aim of this project is to develop shortlists of personal factors relevant to functioning in autism and ADHD to be added to the existing autism and ADHD ICF Core Sets (, ). With the addition of these shortlists, we aim to enrich the existing Core Sets and provide a standardized method to capture personal factors within functional assessment for autism and ADHD. Moreover, through this, we aim to facilitate a more personalized, holistic, and neurodiversity-affirmative assessment and understanding of autism and ADHD. Since the ICF does not provide or endorse any official codes for personal factors, coding these factors could support the development of a universal language within the ICF framework. Therefore, we will explore whether the personal factors relevant to functioning in autism and ADHD, identified during the preparatory phase, can be linked to existing comprehensive taxonomies, such as those developed by Geyh et al. () and Grotkamp et al. (). Specific objectives include: 1) identifying personal factors relevant to functioning in people diagnosed with autism and/or ADHD from multiple perspectives (research, professionals, lived experience, and real-life domains); 2) refining the personal factors identified in the first objective to develop shortlists of personal factors that are important to capture in the functional assessment of autism and ADHD using a Delphi process; and 3) integrating the personal factors into the existing autism and ADHD ICF CoreSets platform. The objective of this paper is to outline the process for developing personal factor shortlists for autism and ADHD.
Method
This project will follow the rigorous multi-phase process established by the WHO and ICF Research Branch () which was also used to develop the full autism and ADHD Core Sets (, ) (see Figure 3). The first phase consists of four preparatory studies conducted to identify personal factors relevant to functioning in individuals diagnosed with autism and/ or ADHD, capturing perspectives from multiple stakeholders (including research-, professional-, lived experience-, and the real-life domain perspectives) across the six WHO regions globally (African, the Americas, South-East Asia, European, Eastern Mediterranean, Western Pacific). The results of the preparatory studies will be used to develop candidate lists of personal factor codes. The findings of these four studies are combined to integrate complementary perspectives and thereby minimizing perspective-bias in the identification of personal factors. Subsequently, in the second phase, the candidate lists of personal factor codes will be presented during an international online Delphi process to create refined shortlists of personal factors most relevant to functioning in individuals diagnosed with autism and ADHD. The chosen methodology will ensure international perspectives from multiple stakeholders are captured, enabling the use of the newly expanded Core Sets across different cultures and contexts. Finally, in the third phase, the personal factors will be integrated into the existing Core Sets and the ICF CoreSets platform for autism and ADHD. A reference group of individuals diagnosed with autism and/or ADHD will be consulted throughout the project to ensure relevance and appropriateness to the community. See Table 2 for an overview of the project's aims, designs, participants and analyses. The project will be conducted in accordance with the rules and regulations of the Swedish Ethical Review Authority, from which approval has been obtained (2025-04955-01-871193).
Figure 3
Table 2
| Phase | Study | Aim | Design | Participants | Analysis |
|---|---|---|---|---|---|
| Preparatory phase I (a) | Scoping review | To identify personal factors relevant to autism and ADHD reported in the scientific literature | Scoping review with narrative synthesis | Published studies on personal factors in autism and/or ADHD | Extraction and thematic clustering of personal factor concepts; linking to existing personal factors classification frameworks; frequency counts per personal factor |
| Preparatory phase I (b) | Survey with professionals | To identify personal factors considered clinically relevant by professionals working with individuals with autism and/or ADHD | Cross-sectional online survey | Clinicians and researchers with expertise in autism and/or ADHD | Thematic analysis of endorsed personal factors; linking to existing personal factor classification frameworks; frequency counts per personal factor |
| Preparatory phase I (c) | Qualitative study | To identify personal factors considered relevant from the perspective of individuals with autism and/or ADHD or their relatives | Qualitative design using focus groups and interviews | Individuals with autism and/or ADHD (> 7 years) or their relatives (> 18 years) | Thematic analysis of endorsed personal factors; linking to existing personal factor classification frameworks; frequency counts per personal factor |
| Preparatory phase I (d) | Cross-sectional multicenter study | To identify personal factors relevant in real life domains | Analysis of relevant personal factors in real-life domains | Individuals with autism and/or ADHD and/or their service provider | Conceptual analysis of the endorsed personal factors; linking to existing personal factor classification frameworks; frequency counts per personal factor |
| Consensus phase II | International Online Delphi Study | To reach consensus on the inclusion and clustering of personal factors | Multi-round Delphi study | International multidisciplinary expert panel including clinicians, researchers, and people with lived experience | Round-by-round descriptive analysis (using CREDES guidelines); consensus will be determined using predefined criteria (e.g., percentage agreement or statistical thresholds) |
| Integration phase III | Integration of the personal factor shortlist into the ICF Core Sets Platform for autism and ADHD | To operationalize the personal factors into clinical usable items, that can be integrated in the ICF Core Set platform | Operationalization of personal factors | International multidisciplinary expert panel including clinicians, researchers, and people with lived experience | An iterative process will be undertaken, using common questionnaire design principles |
Overview of the project's aims, designs, participants, and analyses.
Phase One
Preparatory study one: scoping review (research perspective)
A scoping review will be conducted to capture the personal factors that have been associated with functioning and disability in autism and/or ADHD in the literature. The objectives are to (1) identify which personal factors are investigated within the context of daily life functioning in autism and ADHD, and (2) link the personal factors to an existing taxonomy developed in previous work (, ) in order to quantify the relevance of the personal factors according to scientific literature. A comprehensive database search will identify articles investigating personal factors that may influence functioning in autism and ADHD using a search strategy developed in consultation with experienced university librarians at Karolinska Institutet. The systematic literature search will be conducted in Medline/PubMed, PsychINFO, Web of Science, ERIC, and CINAHL. Search terms will be organized according to the target group (i.e., autism and ADHD), personal factors (e.g., attitude, lifestyle, value, belief), and outcome (e.g., functioning, wellbeing, quality of life). Included articles will date back no longer than 10 years. Articles identified through the search process will be screened for eligibility at the level of title and abstract. Filtered articles will then undergo screening at a full-text level to determine inclusion. Data synthesis will be undertaken in two phases: First, a narrative synthesis will be undertaken by grouping articles and findings thematically. Second, identified personal factors will be linked to an existing taxonomy developed in previous work (, ). Although personal factors fall outside scope of the ICF, our linking process will follow established linking rules for linking content to the ICF () and procedures for linking personal factors that have been employed previously (). To enhance the credibility and dependability of the analysis, two researchers who have completed training from the WHO ICF Research Branch, will independently link the identified personal factors to the existing personal factor coding systems. Disagreements will be discussed until consensus is achieved. Where disagreement cannot be resolved a third, or fourth researcher from the team, also experienced with the ICF and training from the WHO ICF Research branch, will be consulted. Absolute and relative frequencies of personal factor concepts and codes to which the concepts are linked will be reported. In accordance with the guidelines, a category will be counted once for each study ().
Preparatory study two: survey with professionals (opinion leader perspective)
An international online survey will be conducted among professionals in the field of autism and ADHD to gather their perspectives on the personal factors they believe are most relevant to functioning in autism and/or ADHD. Participants will include professionals (e.g., researchers, medical doctors, psychologists, social workers, educators, occupational therapists, and other professionals with relevant experience) with over five years of experience working with individuals (or relatives of individuals) diagnosed with autism and/or ADHD. An internationally diverse sample with varied work experience will be sought. Recruitment will occur through professional networks and organizations, with efforts made to recruit professionals across all six WHO regions. In addition, a web-based search will be conducted by two researchers to identify collaborators, expert networks in autism and/or ADHD, and clinicians with professional experience working with individuals with autism and/or ADHD. Eligible professionals will be asked to recommend further possible participants. Professionals will receive an online survey with a brief explanation of the ICF and personal factors, followed by open-ended questions on which personal factors they consider relevant for functioning in autism and/or ADHD. The survey includes questions based on those proposed in guidelines for the development of ICF Core Sets (), but adapted for our purpose, such as “Based on your experience, which personal factor(s) do you consider important to assess in order to gain a better understanding of daily life functioning and support needs in people with a diagnosis of autism and/or ADHD?” The survey will also include questions assessing whether identified personal factors are perceived as specific to particular diagnostic groups, age groups, or genders. Survey information and questions will be formulated to ensure that the broad variety of possible personal factors are covered and will be informed, in part, by findings from the previously performed scoping review. The survey will be reviewed by the reference group prior to administration and piloted to evaluate clarity, comprehensibility, and feasibility before full implementation. Data-collection will continue until saturation is achieved. Saturation will be considered reached when no new personal factors or relevant insights emerge from at least ten consecutive surveys. Based on prior surveys conducted with the aim of identifying ICF Core Set and shortlists, we anticipate that this may occur at approximately 200 professionals. Collected data will be analyzed in accordance with the established guidelines for two-phase analysis of qualitative data using the ICF (). Phase one comprises an inductive qualitative content analysis approach to extract meaningful concepts. The second, deductive, phase links these meaningful concepts to an existing taxonomy developed in previous work (, ) according to the ICF linking rules (). The same procedure will be used as described in the previous preparatory study (scoping review). Absolute and relative frequencies of personal factor concepts and codes to which the concepts are linked will be reported. In accordance with the guidelines, a category will be counted once for each expert (). In addition, a descriptive analysis will be conducted to explore whether different personal factors are identified across diagnosis, age and gender or other demographic background variables.
Preparatory study three: qualitative study (lived-experience perspective)
A qualitative focus group/interview study will be conducted to identify personal factors relevant to functioning from the perspective of people diagnosed with autism and ADHD themselves, and those closest to them (i.e., caregivers and those involved in their daily life). Participants will include people with a diagnosis of autism and/or ADHD aged 7 years and older with the ability to communicate their experiences using spoken language or other communication like written or augmentative and alternative communication (AAC), as well as individuals over 18 years who are caregivers or people involved in the daily lives of individuals with a diagnosis. Participants from all six WHO regions will be sought across ages (children to older adults), sex/gender, and ethnicity. Participants will not be excluded on the basis of co-occurring psychiatric diagnoses reflecting the high rates of co-occurrence in autism and ADHD and enhancing the ecological validity of the sample. In addition, there are no restrictions on developmental age, as long as the participant is able to communicate their experiences, with or without AAC. Recruitment will occur through our own network interest organizations, social media, clinics, and other established channels of the research team. Data collection will continue until saturation is achieved. Saturation will be considered reached when no new information is identified from at least two consecutive focus groups or interviews. Data will be collected through focus group interviews consisting of 4–8 participants. Each focus group will begin with a brief explanation of the ICF framework and personal factors, followed by open-ended questions exploring which personal factors participants perceive as influencing daily life functioning. Alternatively, one-on-one interviews are offered to accommodate individual preferences and logistical issues. For younger participants, or for those who prefer to participate in the interview together with a trusted person, this option is provided. Interviews are conducted either in person, over the phone, or online (e.g., via Zoom or similar platforms), and will be moderated by experienced researchers and clinicians. The interview questions are to be developed in consultation with the reference group. They will be informed by the preceding preparatory studies and will be formulated to ensure the broad variety of possible personal factors are covered. In addition, an online questionnaire on demographic information will be assessed. The interview questions will also be piloted to assess clarity, comprehensibility, and feasibility prior to full deployment. Data will be analyzed using the same two-phase process described in the professional survey study. Absolute and relative frequencies of personal factor concepts and categories to which the concepts are linked will be reported. In accordance with the guidelines, a category will be counted once for each participant (). In addition, a descriptive analysis will be conducted to explore whether different personal factors are identified across diagnosis, age and gender or other demographic background variables.
Preparatory study four: cross-sectional multicenter study (real-life perspective)
An empirical cross-sectional study will identify the personal factors that are relevant for functioning in individuals diagnosed with autism and/ or ADHD in real-life domains. Participants will include individuals with a diagnosis of autism and/or ADHD, who attend clinical centers, education or employment, social services, and leisure settings (e.g., sport clubs) across the six WHO regions. Approximately 100 participants will be recruited through our own networks interest organizations, social media, clinics, and other established channels of the research team. Professionals in different settings will be asked to identify eligible clients. When the client consents, the professional is asked to complete a personal factor checklist developed based on the preceding studies, following a similar structure to the ICF checklist (). This questionnaire will also collect demographic information. The checklist will include a combination of health records, documentation, observations, and semi-structured interviews assessed by professionals. Alternatively, the checklist can be completed by the participants themselves (for 7-year-olds and older) or with help from a researcher. Descriptive statistics will be provided, and absolute and relative frequencies of personal factor concepts and codes will be reported. See the previous preparatory studies for a description of the linking process. In addition, a descriptive analysis will be conducted to explore whether different personal factors are identified across diagnosis, age and gender or other demographic background variables.
Phase two
Following the completion of the four preparatory studies, all identified personal factors will be systematically integrated into a single candidate list by the research team. Personal factors identified across studies will be pooled, deduplicated, and assigned a provenance profile indicating in which preparatory studies they were identified, how frequently they were mentioned within each study, and how they link to the existing personal factor classification frameworks (, ). The candidate list will be organized into thematic clusters based on conceptual similarity. This structured candidate list, with cluster organization and provenance profiles visible to participants, will serve as the input for the Delphi process.
International online delphi study
Results from the preparatory studies will be further processed during an international online Delphi process to identify the most relevant personal factors for functioning in individuals with autism and/or ADHD. Participants will be approximately 30 experts with clinical, academic, and/or lived expertise relevant to autism and/or ADHD. Experts are individuals with lived experience of autism and/or ADHD or their relatives and professionals (e.g., researchers, medical doctors, psychologists, social workers, educators, occupational therapists, and other professionals with relevant experience) with over five years of experience working with individuals (or relatives of individuals) diagnosed with autism and/or ADHD. Participants will be eligible if they are aged 18 years or older and can read and respond to online survey materials in English. The Delphi approach is an iterative, structured method involving multiple rounds of questionnaires and discussions aiming to seek consensus. The Conducting and REporting DElphi Studies (CREDES) guidelines will be used as a framework (). Up to three rounds will be conducted entirely online. Consensus will be determined using predefined criteria (e.g., percentage agreement or statistical thresholds), specified prior to the first Delphi round, in combination with structured qualitative feedback and iterative discussion across rounds via the online platform. In addition to the personal factor concept, the experts will be presented with several open-ended questions including age-specific and diagnosis-specific considerations for the development of potential separate shortlists. This iterative methodology ensures rigorous refinement of the personal factors, resulting in the development of a final set of personal factor codes necessary to capture when assessing functioning in individuals with autism and/or ADHD.
Phase three
Integration of the personal factor shortlist into the ICF CoreSets platform for autism and ADHD
The shortlists of personal factors will be operationalized into a set of items for both self- and informant reports. A procedure similar to the one used to operationalize the autism and ADHD Core Set codes into items for the ICF CoreSets platform will be applied (). An iterative process involving stakeholders and professionals from different countries will be undertaken, using common questionnaire design principles ().
Discussion
This protocol paper outlines the process of developing shortlists of personal factors relevant to functioning in individuals diagnosed with autism and/or ADHD, with the aim of integrating them into the ICF Core Sets for these conditions. By incorporating standard lists of personal factors that are considered most important by multiple stakeholders, the Core Sets for autism and ADHD will be expanded to fully reflect the biopsychosocial model underlying the ICF framework. These enriched Core Sets will support more inclusive, context-sensitive, and person-centered approaches in assessment and support planning for individuals diagnosed with autism and/or ADHD.
Incorporating the personal factors in a systematic manner further supports the aim of the ICF Core Sets for autism and ADHD to allow for a more nuanced understanding of functioning, moving beyond diagnostic categories to reflect individuals holistically, including their strengths, challenges, and contexts from multiple perspectives, including lived experience. This will yield several advantages for assessment, intervention planning, as well as for the general approach to individuals with a diagnosis of autism and/or ADHD. First, including personal factors enables a more nuanced understanding of individuals' unique characteristics and strengths. As these factors are, by definition, independent of diagnostic categories, they offer a non-pathologizing perspective that is consistent with the neurodiversity paradigm. Second, although personal factors are often considered during clinical practice, they frequently lack a structured and standardized format for documentation in medical records. Integrating these factors systematically into the ICF Core Sets would support more consistent and systematic reporting, enhancing the quality and completeness of assessments. Finally, rather than viewing functioning solely through the lens of diagnostic categories and functional abilities and disabilities, personal factors allow us to consider the unique traits, preferences, beliefs, values, coping styles, and life experiences that shape how a person engages with their environment. This shift acknowledges that functioning is influenced by dynamic interactions between both internal and external contextual factors. By adding a personal factors shortlist/s, we both adhere to the holistic framework of the ICF as well as to the standardized and universally applicable language that the ICF provides.
Challenges
Developing systematic categorized shortlists of personal factors relevant to autism and ADHD will not be without challenges. First, the identification of personal factors involves nuanced and sensitive considerations, particularly in the context of autism and ADHD. While the ICF framework clearly defines personal factors as distinct from health conditions and health states to maintain conceptual clarity, this distinction is not always straightforward in practice. In NDC's such as autism and ADHD, the boundaries between what may be considered a personal factor and what is viewed as part of the health condition are often blurred. This complexity is further amplified by the neurodiversity paradigm, which frames autism and ADHD as natural variations in human functioning rather than disorders. Within this perspective, the distinction between personal factors and health condition may not be meaningful or even present. However, a sole reliance on diagnostic frameworks like the ICD or DSM can sometimes lead to personal factors being unintentionally framed as symptoms. For instance, the personal factor of “having strong/deep interests” or “being passionate” may be interpreted as a trait of the condition due to its resemblance to the ICD/DSM criterion: “highly restricted, fixated interests that are abnormal in intensity or focus”. However, explicitly identifying “having strong/deep interests” or “being passionate” as a personal factor encourages clinicians to critically reflect on such traits and consider their relevance to functioning in a more nuanced and individualized way. Additionally, there may be overlap between personal factors and other components of functioning within the ICF framework. For instance, individual psychological assets, by the WHO considered as part of the personal factor, can also be classified under the code for body functions “b126 Temperament and personality functions” (e.g., b 1,265 optimism). Importantly, the aim of this project is not to classify traits on an individual level as either personal factors, body functions or symptoms of a health condition. Instead, our goal is to identify personal factors that are relevant to functioning in individuals diagnosed with autism and/or ADHD, and that are not yet captured by the existing components of the ICF. By doing so, we aim to expand the ICF Core Sets in a way that supports more person-centered assessment and planning. While this approach may involve navigating some ambiguity, it broadens the perspective through which health conditions are assessed.
A second challenge is the absence of a universally accepted classification system for personal factors, particularly within the field of NDC's. As noted in the introduction, personal factors are acknowledged in the ICF framework but remain uncoded, resulting in a lack of standardized documentation and assessment. For the systematic application of the personal factor shortlists, it is essential that identified concepts can be linked to a coherent and universal taxonomy. Among the existing frameworks, the taxonomies developed by Geyh et al. () and Grotkamp et al. () offer the most comprehensive and structured approaches to categorizing personal factors. Both aim to be applicable across diverse health conditions and settings and seek to clearly distinguish personal factors from other components of the ICF. Geyh's taxonomy is organized into seven chapters in which psychological and experiential dimensions are emphasized, including short-term feelings and subjective aspects of personal factors. Grotkamp's taxonomy, on the other hand, is structured into five chapters that are more oriented toward long-term and stable conditions, with a focus on practical application in rehabilitation and social medicine. Although both taxonomies appear applicable to the field of autism and ADHD, their relevance and suitability must be critically evaluated throughout our research project. These conditions present unique ways in which personal factors are expressed, experienced, and interpreted, and it is crucial that the taxonomy is sensitive to these nuances. In the preparatory studies, we will begin by applying both the taxonomy of Geyh et al. () and Grotkamp et al. () to structure the identified personal factors. The findings from these studies will guide us in assessing the extent to which each taxonomy captures the complexity and specificity of personal factors in autism and ADHD. This process, together with insights from the Delphi study, will inform our decision on which, if any, taxonomy (or combination there-of) offers the best conceptual and practical fit for this population.
Third, both autism and ADHD persist across the life span, and both someone's functioning and the context in which it occurs may vary in nature with age. This is also reflected in the age-specific Core Sets that have been developed for autism and ADHD (, ). Consequently, the personal factors that are most relevant to functioning are also likely to vary across different life stages. Developing a universal shortlist of personal factors applicable to all individuals diagnosed with autism and ADHD, regardless of age, may therefore be challenging. In the preparatory studies, we will explore how personal factors differ across the life course. These studies will provide insight into whether life stage-specific shortlists of personal factors are needed and will be further addressed in the Delphi process.
Fourth, while this project is designed to develop a shortlist of personal factors relevant to functioning in both autism and ADHD, we acknowledge that these conditions, although frequently co-occurring (), differ in their clinical presentation, lived experiences, and developmental trajectories. It is therefore reasonable to question whether a single list can adequately capture the personal factors pertinent to both groups. However, the ICF framework is intentionally diagnosis-independent and etiologically neutral, which aligns with a transdiagnostic approach. Developing a shared list for autism and ADHD is consistent with this principle and may facilitate a more inclusive understanding of personal factors across NDC's. In the preparatory studies, we will specifically explore how personal factors differ across autism and ADHD. These studies will provide insight into whether health condition specific shortlists of personal factors are needed, which will be further addressed in the Delphi process.
Fifth, several potential sources of bias should be considered. These include publication bias in the scoping review, perspective-specific biases related to professional, lived-experience, and multicentre inputs, and limited global representation due to language constraints. Additionally, the requirement for certain communication ability with or without AAC in the qualitative sub-study may restrict direct inclusion of individuals with certain intellectual abilities. These biases will be addressed through the integration of findings across the preparatory studies, transparent reporting across sub-studies and the Delphi process, which will aim to include a diverse expert panel. In addition, to mitigate the restricted inclusion of individuals with specific intellectual abilities, we also include relatives of individuals with autism and/or ADHD to capture perspectives from individuals with varying intellectual abilities.
Last is the critical and often debated issue of whether personal factors need to be classified in the same way as the other components of the ICF and the risk that such coding may be perceived as attributing responsibility of the disability to the individual or the risk of “blaming the victim” (, ). We fully acknowledge the ethical sensitivity of this concern and consider it a central point of attention in our project. However, the potential for misinterpretation underscores the importance of a careful and reflective approach to conceptualizing and operationalizing personal factors. Rather than solely assessing an individual's functioning and disability within their external environment, the formal integration of personal factor codes into the ICF Core Sets for autism and ADHD can be viewed as an opportunity to represent the person in a more holistic manner, taking into account their personal background, characteristics, and attributes. This includes not only the challenges an individual may face, but also their strengths and resources. By developing the personal factor shortlist in a systematic way, guided by a reference group and based on input from relevant stakeholders, we aim to support a more individualized and needs-based approach to care and support, which will mitigate the potential misuse of personal factors. At the same time, this requires a shared responsibility among researchers, clinicians, and policymakers to ensure that personal factors are described and applied in a respectful, non-stigmatizing, and empowering manner.
Conclusion
This project will further work towards a more holistic approach to person-centered assessment of functioning and support by developing a personal factor shortlist to be incorporated into the existing ICF Core Sets for autism and ADHD. Incorporating personal factors aligns with priorities of the NDC community and their wishes for a more strengths-based and person-centered approach towards assessment of functioning. Relevance and accuracy of the personal factor codes will be ensured through the multi-phased, scientific process of development, where the six WHO regions are represented across clinical, research, and real-life domains. This project marks an important shift in focus and provides significant updates to the Core Sets for autism and ADHD.
Statements
Data availability statement
The original contributions presented in the study are included in the article/Supplementary Material, further inquiries can be directed to the corresponding author.
Author contributions
JT: Conceptualization, Writing – original draft, Writing – review & editing. MB: Conceptualization, Funding acquisition, Supervision, Writing – review & editing. EA: Writing – original draft, Writing – review & editing. KL: Writing – review & editing. LA: Writing – review & editing. JH: Writing – review & editing. JR: Writing – review & editing. SB: Conceptualization, Funding acquisition, Project administration, Supervision, Writing – review & editing.
Funding
The author(s) declared that financial support was received for this work and/or its publication. This project is funded by Marcus and Amalia Wallenberg Foundation.
Conflict of interest
SB discloses that he has in the last 3 years acted as a consultant or lecturer for Medice, Takeda, Neuraxpharm, Merk Sharp & Dohme, and LinusBio. He receives royalties for textbooks and diagnostic tools from Hogrefe, UTB, Ernst Reinhardt, Kohlhammer, and Liber. SB is CEO of NeuroSupportSolutions International AB.
The remaining author(s) declared that this work was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Generative AI statement
The author(s) declared that generative AI was used in the creation of this manuscript. Generative AI (M365 Copilot Chat) was used to improve clarity and readability of the text. After using this tool, the authors reviewed and edited the content as needed and take full responsibility for the content of the published article.
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Summary
Keywords
ADHD, autism, ICF, personal factor, person-centered
Citation
Tieskens J, Black MH, Asp E, Lundin Remnélius K, Alehagen L, Hasslinger J, Ristolainen Spak J and Bölte S (2026) Hidden in plain sight: personal factors in autism and ADHD – a protocol for extending the ICF Core Sets for autism and ADHD. Front. Rehabil. Sci. 7:1813836. doi: 10.3389/fresc.2026.1813836
Received
19 February 2026
Revised
14 May 2026
Accepted
25 May 2026
Published
16 June 2026
Volume
7 - 2026
Edited by
Andrea De Giacomo, University of Bari Aldo Moro, Italy
Reviewed by
Nihit Gupta, Wright State University, United States
Alicia Montgomery, Sydney Children's Hospital, Australia
Updates
Copyright
© 2026 Tieskens, Black, Asp, Lundin Remnélius, Alehagen, Hasslinger, Ristolainen Spak and Bölte.
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Jacintha Tieskens jacintha.tieskens@ki.se
Disclaimer
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.