The Autism Intervention Research Network on Physical Health Autistic Researcher Review Board Free

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:

1. Includes the voices of autistic individuals from across the lifespan; and

2. Ultimately 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.^5,12 

Having 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.¹⁵ 

The 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.¹⁸ 

Keeping 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:

1. 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.

2. To foster the development and growth of collaborations between AIR-P sites and autistic people, caregivers, and other community stakeholders.

3. To promote an evidence base that is scientifically rigorous, inclusive of heterogeneous populations with intersectional identities, and sensitive to community needs.

4. 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.

5. 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.

AIR-P

Autism Intervention Research Network on Physical Health

ARRB

Autistic Researcher Review Board

PERMA

positive emotions, engagement, positive relationships, meaning and accomplishment