IntroductionSelf-determination is a fundamental human right positively related to quality of life. However, Autistic people are reported to be less self-determined than non-autistic people. We aimed to (1) understand what self-determination means to Autistic people from their perspective, (2) explore their perceptions of current barriers to being self-determined, and (3) learn from Autistic people about how they would like to be supported to be self-determined.MethodsSemi-structured interviews were done with 19 Autistic adults without co-occurring intellectual disability. Data were analyzed by three Autistic and two non-autistic researchers through an iterative process of data familiarization, coding, and theme development, informed by reflexive thematic analysis. Autistic Community Partners (ACP) were also engaged throughout the study, and provided substantive feedback on all methods and results.ResultsSelf-determination held the same meaning for Autistic people as non-autistic people. More specifically, participants discussed having the opportunity and support to make choices and decisions in life without unnecessary control from others. Experiences of self-determination were centered around: (1) lack of opportunity, influenced by ableist expectations and discrimination, and (2) executive processing differences that interfered with choice and decision-making. Desired areas of support related to providing opportunities to (1) make choices and exert autonomy, (2) be supported to unmask and be valued as one’s authentic Autistic self, and (3) offering pragmatic support for executive processing differences.ConclusionAutistic adults desire to be self-determined and can flourish with support, as they determine to be appropriate, which might look different from support commonly offered or sought by non-autistic people. Although individualized support was discussed, the ideal desired support was for an inclusive society that values and respects their neurodivergence, rather than imposing ableist expectations. An inclusive society is only achievable through reduced (or eliminated) stigma and prejudice against Autistic people.

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

To increase the involvement of stakeholders in the autism research process, a committee of autistic researchers known as the Autistic Researcher Review Board (ARRB) has been established within the Autism Intervention Research Network on Physical Health (AIR-P). The ARRB includes a multinational group of academics, lecturers, and autistic consultants spanning a wide range of educational backgrounds and career stages. By harnessing the unique perspectives of ARRB members as both researchers and lived experience experts, this organization aims to ensure that the diverse perspectives of autistic individuals are appropriately considered during the conceptualization, conduction, and communication of research findings in the area of autism and physical health. The present commentary provides an introduction to the ARRB, as well as an overview of its guiding principles, research priorities, and goals for the future.Engagement of autistic individuals in the research process is crucial to ensure that autism research ultimately serves to improve the overall well-being of autistic individuals, as defined by autistic individuals.1,2 To this end, patient-oriented research3 and community-based participatory research paradigms have recently emerged. However, Pellicano et al4 suggest that autism researchers have been reluctant to engage the autistic community in research.The ARRB has been established as part of the AIR-P to serve as an innovative model for how autism researchers and autistic voices can effectively work together. The ARRB consists of a group of autistic researchers at various career points as academics, lecturers, and consultants. This gives the unique perspective as both scientists and lived-experience experts, with which to assess the merit of the proposed research projects and their relevance to improve the lives of autistic people. Our mission is to ensure that research conducted by the AIR-P: Includes the voices of autistic individuals from across the lifespan; andUltimately aims to improve the health and well-being of autistic people as defined by them.We will guide our decisions using the values of neurodiversity, well-being, and a study of physical health that reflects a deeper understanding of issues at the patient, provider, systems, and population levels and autistic individuals subjective experiences.Neurodiversity has multiple definitions. As a descriptive term, "neurodiversity" refers to the simple fact that all brains are different5 and highlights that the diversity of human brains is "every bit as crucial for the human race as biodiversity is for life in general".6 As such, neurodiversity encompasses both "neurodivergent" and "neurotypical" people.7 However, neurodiversity refers also to a political movement with distinct social and political goals.The neurodiversity movement has its roots in the autistic community's efforts to push back against dominant autism narratives, beginning in the early 1990s with Jim Sinclair and Autism Network International.8 While the meaning of neurodiversity continues to evolve through dialogue,7,9–12 in general, the neurodiversity movement opposes attempts to find a "cure" for autism along with interventions that promote "indistinguishability from peers," instead advocating for greater acceptance and support of neurologic differences and adoption of more person-centered goals consistent with the preferences of autistic people.5,12Having said this, neurodiversity advocates make clear that the movement does support improving adaptive functioning and addressing the various medical problems that commonly occur in neurodivergent individuals (such as forms of epilepsy), which may inherently threaten their quality of life.13 They also support the need for caregivers, allies, and professionals to provide services and strategies that allow autistic individuals to better adapt to the world around them,13,14 consistent with protecting the rights of and promoting social inclusion for neurodivergent people.7 The neurodiversity framework's emphasis on helping autistic individuals achieve greater quality of life as the endpoint of autism advocacy ensures that we retain a practical focus on promoting happiness and wellness, rather than 'normalization,' as the indication of our success.14 Autistic neurodiversity advocates have built an increasingly broad coalition with other disability groups, including many parents of non-autistic children and professional advocates.15The ARRB aims to ensure that research conducted by the AIR-P is poised to make a positive contribution to the well-being of autistic people. To achieve this aim, we have chosen to operationalize well-being for individuals on the autism spectrum within the framework of Seligman's Positive Emotions, Engagement, Relationships, Meaning, and Accomplishment (PERMA) theory of well-being.16 Notably, this model was developed to describe and promote well-being among neurotypicals without considering how these definitions of "idealized personhood" may look different for autistic people. Unfortunately, in practice, "well-being" is often conflated with the outcomes valued by neurotypical researchers, professionals, and society,17 and there continues to be very little research that specifically identifies what autistic people themselves would consider a good quality of life.18Keeping these caveats in mind, Seligman's PERMA model suggests that there are 5 pillars to human flourishing16: (1) Positive emotions or a subjective sense of well-being; (2) engagement, which refers to Csikszentmihalyi's19 notion of "flow" or "intense concentration, absorption and focus" and is highly relevant given the special interests of autistic people20; (3) positive relationships can be defined as having "a strong sense of connection with others in the community,"21 but this may be operationalized differently among people on the spectrum (eg, prioritizing the development of a few close friendships); (4) meaning refers to having a sense that one's life has direction, purpose, and value22; and (5) accomplishment, which is similar to Ryan and Deci's Self-Determination Theory,23 which states that a feeling of 'competence' or 'working to achieve mastery' is a core basic human need.The multidimensional approach of Seligman's model is important because autistic people often struggle a great deal in some areas while also experiencing high levels of well-being on other dimensions.24 The ARRB aims to use the PERMA model to guide our decisions about whether AIR-P research ultimately serves the well-being of autistic individuals, such that each research project must ultimately have the potential to meaningfully improve the lives of autistic people in at least 1 of the 5 domains of well-being.Within the PERMA framework, the physical health of the autistic population is a particularly important area of research, and interventions targeting co-occurring medical conditions have the potential to greatly improve the well-being of many autistic children and adults. Most prior work on physical health in autism has specifically focused on a small number of disorders that are prevalent in autistic children, including epilepsy, gastrointestinal issues, and sleep disorders.25 Research in the areas of health services and medical anthropology has also begun to identify a number of barriers at the patient, provider, and systems levels that prevent autistic people from accessing quality medical care, as well as the ways in which autism-related health disparities are compounded by other factors such as race, ethnicity, sex, gender, and socioeconomic status.26–28 However, far less research has been conducted on the physical health of autistic adults or adult-onset medical conditions,29 and there is a substantial lack of information regarding the health of older adults on the autism spectrum.30 Moreover, even in cases where the co-occurrence of autism and certain medical conditions is firmly established (eg, epilepsy), it remains unclear whether any of these conditions share an etiologic origin with autism or result from autism-related health disparities.31 Thus, to develop effective interventions for physical health conditions in the autistic population, research in this area must move beyond simply describing the overlap of autism with other medical conditions and instead focus on developing a deeper understanding of the mechanisms of these cooccurrences at the patient, provider, systems, and population levels.Furthermore, when we consider the physical health of individuals on the autism spectrum, it is important to understand the ways in which autism itself can impact an individual's subjective experience of their illness. In particular, differences in interoceptive sensory processing in the autistic population32 may alter the ways in which symptoms are perceived, potentially reducing the effectiveness of standard diagnostic and treatment modalities for many common conditions. While there has been relatively little research to date assessing the adequacy of standard-of-care medical treatments in the autistic population, we believe that such work can highlight the areas in which autistic people people may not benefit sufficiently from interventions established in the general population.As a starting point for our work in supporting the AIR-P network, we have developed 5 primary goals for the ARRB: To ensure that we use our dual perspectives as researchers and autistic people to guide AIR-P research and their development of health interventions and supports for autistic individuals. Although we recognize our privilege as researchers, we aim to attempt to accurately represent the voices of our peers on the autism spectrum, so that we can ultimately promote autistic people health and well-being.To foster the development and growth of collaborations between AIR-P sites and autistic people, caregivers, and other community stakeholders.To promote an evidence base that is scientifically rigorous, inclusive of heterogeneous populations with intersectional identities, and sensitive to community needs.To ensure that results of AIR-P research are communicated respectfully and in a manner that is accessible to autistic people and other stakeholders. The ARRB will expect use of respectful terminology33 in AIR-P research and publications and, for community dissemination, will encourage use of additional media and formats.To inspire other research networks and organizations to use innovative models to increase collaboration with autistic people in all stages of research from conceptualization to dissemination.In sum, we believe that the establishment of the ARRB represents a major step forward in improving stakeholder involvement in autism research. Our mission is to ensure that the diverse perspectives of autistic individuals are appropriately considered during the conceptualization, conduction, and communication of research findings in the area of autism and physical health. Furthermore, we embrace a neurodiversity perspective, which emphasizes the need to reconsider what constitutes "quality of life" for autistic people when determining whether an intervention is beneficial. We aim to promote research that is scientifically rigorous, clinically applicable, inclusive of heterogenous populations, and driven by community priorities, with specific emphasis on the notion that such research will ultimately improve the health and well-being of autistic people. Although the goals of the ARRB and its role within the AIR-P network may change over time, the inclusion of autistic collaborators in the network's research will help to ensure that such research is conducted and communicated in a way that maximizes its benefit for the population that it aims to serve.

Purpose Rehabilitation science has, for years, endorsed a connection between quantitative research and the philosophical assumptions of positivism. These assumptions can limit the scope of rehabilitation research, particularly in relation to matters of equity, diversity, and inclusivity. As our field moves toward a greater focus on inclusivity in research design and patient-centred care, it is imperative that we reconsider the theoretical foundations of rehabilitation research and practice.Methods We provide an analysis of positivism on equity, diversity, and inclusivity within quantitative rehabilitation research, using the Participant Intervention Comparison Outcome (PICO) model to provide structure for the resultant discussion and recommendations.Results Our analysis reveals that there are significant limitations and ethical concerns to engaging in positivism as the primary paradigm for quantitative rehabilitation research. We argue that decoupling of positivism and quantitative research methods may be warranted.Conclusions Equitable and inclusive rehabilitation research requires the researcher to consider variables which are neglected in the positivist paradigm. We argue that critical theory can equip researchers with a lens to better address injustices within rehabilitation research. We provide a series of recommendations for researchers to engage critical theory at each stage of the PICO model of clinical trials.IMPLICATIONS FOR REHABILITATIONCommon assumptions in quantitative rehabilitation research (i.e., positivism) can limit the utility of research findings to rehabilitation patients.Equitable, diverse, and inclusive participant samples in research better reflect the diversity of real world rehabilitation patients, helping us better serve these populations.Critical theory can help researchers and clinicians identify and avoid interventions that may cause harm to rehabilitation patients.Research and practice that prioritize concepts of “normalcy” (i.e., “normal gait,” “normal behaviours”) may perpetuate negative concepts of disability and further marginalize the individuals that our interventions aim to serve.

Nationally and internationally, efforts are ongoing to promote diversity, equity, and inclusion in healthcare and other fields. These efforts require consideration of ways in which language and assumptions impact individuals and communities. The autism and disability spheres are no exception. Indeed, the mental health of autistic people is predicted by the degree to which they feel society accepts them as autistic.1 Thus, we believe discourse that disparages autism could be harmful to autistic people’s well-being. Autistic individuals who face further stigma and discrimination due to other intersectional identities might be particularly vulnerable. Unfortunately, autism research and practice have traditionally used disparaging language grounded in the medical model.Some might object that alternatives to traditional medical model terms are subjective or unscientific. However, we believe traditional terminology is heavily laden with subjective value judgements. For example, the traditional term “disorder” has a decidedly negative connotation. It also implies that individuals’ own characteristics are responsible for their challenges, and it suggests a need to eliminate this disorder. In contrast, the more nuanced word “disability” allows both individual characteristics and societal or contextual barriers to contribute to challenges. The term disability thus appears to be both more scientifically appropriate and less stigmatizing toward a vulnerable population than disorder.In Table 1, we list various traditional terms and concepts that we believe are problematic, along with suggested replacements. We also suggest that practitioners and researchers balance a focus on autistic individuals' challenges with discussion of their strengths and potential. This balanced approach may be especially important for families of young children whose futures may be unclear and a source of considerable anxiety to caregivers.Furthermore, researchers and practitioners should be aware of an ongoing debate between supporters of identity-first (“autistic person”) and person-first (“person with autism”) language. Many autistic individuals support identity-first language2,3 and some fear that person-first language reflects negative attitudes toward autism.4 However, others endorse person-first language.2,3 The term “person on the autism spectrum” is often the most preferred term among autistic individuals and other stakeholder groups,2,3 and this verbiage is typically found to be acceptable by proponents of both person-first and identity-first language. Practitioners should ask about and respect the language preferences of individuals “on the spectrum” who can articulate their views.Overall, in light of concerns that typically-developing people struggle to understand autistic perspectives,5 we urge practitioners and researchers to strive to have empathy for how their language sounds to autistic people. We also suggest it can often be helpful to ask oneself if one would use similar phrasing with other marginalized communities. We feel that there needs to be a shift toward “cultural humility” and willingness to learn from autistic people about autistic identities and how to promote autistic well-being.Practitioners and researchers interested in a more detailed discussion of appropriate autism terminology should refer to Bottema-Beutel and colleagues.6 We provide definitions of neurodiversity terminology (eg, neurodiverse, neurodivergent) in Supplemental Table 2.