The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda

The research agenda development process involved a collaborative process among the AIR-P Advisory Board (n = 33), Steering Committee (n = 14), and Autistic Researcher Review Board (ARRB) (n = 8). The Advisory Board is composed of researchers and practitioners across the United States who have expertise in autism and support research efforts within the network. The Steering Committee is composed of interdisciplinary researchers, practitioners, and other stakeholders with professional expertise, as well as personal experience working with or caring for autistic individuals across the lifespan. The ARRB is composed of autistic researchers and scholars in the United States, United Kingdom, and Canada who leverage their unique personal experiences to inform research that seeks to enhance the lives of autistic individuals. The network engagement phase of the methodology (described below) included a subsample (n = 24) from the Advisory Board (n = 13; 54%), Steering Committee (n = 6; 25%), and ARRB (n = 5; 21%). This subsample included individuals with diverse levels of training and education (PhD: n = 10, 41%; MD/PhD: n = 5; 21%; MD: n = 4, 17%; students and residents: n = 3, 13%; and master’s level: n = 2, 8%). The sample also included those who identified as autistic (n = 5; 21%), those with an autistic family member or close friend (n = 12; 50%), and caregivers (n = 5; 21%).

The methodology consisted of 3 phases:

1. Ideation and design: through a series of planning meetings, the Steering Committee identified preliminary priority domains based on their areas of expertise and background knowledge of the literature;

2. Literature review and synthesis: the Steering Committee created a targeted annotated bibliography of quantitative and qualitative research in the identified domains and synthesized the findings in a literature review to refine the domains; and

3. Network engagement: experts across the network (n = 24) engaged in a 2-step process via Qualtrics surveys to identify priority research topics within each domain.

In the first step, the sample provided open-ended responses regarding the highest-priority research topics within each of the research domains identified during the series of planning meetings and review of the literature. The open-ended responses were organized utilizing Dedoose coding software⁶ and coalesced into 6 to 10 priority research areas within each domain. In the second step, participants were asked to participate in a follow-up survey to identify the top 3 priority research areas from the options within each domain, with consideration of the following criteria:

1. Need/urgency (ie, the influence of the research topic on the physical health and well-being of autistic individuals; severity of consequences [eg, number of autistic individuals affected by the issue]; and presence of critical gaps in knowledge);

2. Research impact (ie, the ability of the knowledge gained from this research topic to translate to meaningful progress in 5 to 10 years and the potential to lead to improvements in physical health status, quality of care, public health, or policy over the longer term); and

3. Person/family-centeredness (ie, how well the research topic reflects the experiences and priorities of autistic individuals and their families).

The research topics most frequently endorsed in participants’ top 3 rankings across all categories were identified. Cross-cutting research domains—that is, research areas that apply to all domains and topic areas—emerged throughout all steps of the process.

The AIR-P Research Agenda, along with the highest-ranking research topic areas identified in the network engagement phase, are outlined in Table 1. The research agenda consists of 6 core research priority domains, each with critical implications for autistic individuals’ physical health, and 4 cross-cutting priorities that applied across all domains.

Relative to their non-autistic counterparts, autistic children and adults have significantly more physician visits and medications prescribed and higher medical costs and total expenditures per treated patient.^7–10  Nonetheless, they create a smaller burden on health insurers because of their relatively low receipt of necessary treatment and services.^11–14  In addition, there are pronounced racial, ethnic, and gender health inequities in access to quality medical services.^13,14 

Of particular concern, only half of autistic individuals receive comprehensive primary care consistent with the medical home model as recommended by the American Academy of Pediatrics. This model is defined as care from a personal provider that is preventive, family-centered, compassionate, culturally appropriate, accessible, comprehensive, and coordinated.¹⁵ A range of patient, provider, and systemic obstacles to an optimal medical home for autistic individuals has been cited in the literature.^16–19  These obstacles perpetuate unmet health care needs related to physical and mental health, prescription medications, and preventive care, and increase emergency service utilization.²⁰ Specific research priorities that emerged included promoting autistic individuals’ self-determination (ie, capacity for autonomy, self-efficacy, and decision-making) in health care (n = 19, 79%), enhancing primary care provider training (n = 18, 72%), and mental health and psychiatric care (n = 14, 58%).

Although many autistic individuals experience challenges related to lifestyle, including nutrition, gastrointestinal issues, food selectivity,²¹ obesity and associated chronic health conditions,^16,22, physical activity and motor performance,²³ sleep,^24–26  stress and anxiety,^27,28 social connectedness,^29,30 and substance use,³¹ these challenges are variable in the autistic population. In addition, findings on the effectiveness of interventions have been inconclusive because of reliance on small sample sizes and subsequent failure to obtain robust effect sizes on physical health outcomes.^22,25 Research priorities that emerged included lifestyle interventions that promote social connectedness (n = 17, 71%), build self-advocacy capacities (n = 16, 67%), and engage families and communities (n = 12, 50%).

Although health systems and services emerged as an important priority, a focus on transitions and coordination appeared to be particularly salient. Autistic individuals and their families characterize their experiences as a “lifetime of difficult transitions.” They report difficulty using services, lack of source of care, inadequate insurance coverage, and lack of shared decision-making and care coordination. There are also a limited number of specialized service providers and resources that are often highly fragmented and governed by stringent and restrictive program and funding criteria.^32–35  Further, autistic individuals frequently encounter a poor person–environment fit in health care and service settings and uncertainty about the roles of parents in facilitating transitions.^34,35 Transition challenges are heightened for Black and low-income youth and those with comorbid conditions.^36,37 Access to a medical home is an important predictor of receiving health care transition services because autistic youth with a medical home are almost 3 times as likely to receive health care transition services as youth without a medical home.³⁸ Specific research priorities that emerged included supporting health care navigation and models of transition practices (n = 16, 67%), training primary care providers in the adult health system (n = 14, 58%), and educating individuals and families about transition care (n = 14, 58%). In recognition of the need for further research on health care transitions, the Maternal and Child Health Bureau has prioritized research, performance measurement, and data analysis around transitions. As an example, they invested in the Autism Transitions Research Project for Youth and Young Adults with Autism Spectrum Disorders. The AIR-P will collaborate with the Autism Transitions Research Project over the course of the grant.

Mounting evidence suggests that gender-biased diagnostic and clinical criteria, along with actual sex and gender differences, may lead to the delayed recognition of autism in females.³⁹ Barriers to service access for autistic women may continue into adulthood, particularly for health services related to reproductive health and pregnancy.⁴⁰ Autistic adults are less likely to be gender-conforming than non-autistic adults. Belonging to a sexual or gender minority group is associated with higher rates of unmet health care needs among autistic people and, in turn, poorer physical health.⁴¹ Indeed, autistic individuals often receive insufficient support regarding their sexuality and gender identity.^42,43 Further compounding these challenges, autistic individuals are at higher risk of sexual victimization and abuse compared with non-autistic people. These experiences are associated with suicidal or self-injurious behavior and psychiatric hospitalizations.⁴⁴ Autistic adults report less perceived and actual sexual knowledge, which may increase the risk of sexual victimization.⁴⁵ Specific research priorities that emerged included developing sexual health curricula for autistic individuals (n = 17, 71%), promoting sexual health education among individuals and families (n = 14, 58%), understanding intersectional identity issues (n = 12, 50%), and promoting self-determination (n = 12, 50%).

Although autistic individuals have been found to experience motor impairments, including impairments related to gross and fine motor, postural control, and imitation and praxis, such impairments are not universal nor specific to autism.^46,47 The current research base surrounding motor-based interventions has shown some promising results, but is largely based on case studies and individuals without intellectual disability, or have yielded small-effect sizes.^48–50  Rigorous studies that include autistic individuals with heterogeneous behavioral and intellectual abilities are needed to objectively evaluate (1) motor dysfunction, and (2) motor-based interventions that target fundamental motor skills, social communication, and proprioceptive awareness.^51–53  Specific research priorities that emerged were understanding and addressing co-occurring neurologic conditions (n = 18, 75%) and neurologic developmental trajectories and adult outcomes (n = 12, 50%), as well as coordinating neurologic care (n = 12, 50%).

Although autism has been found to be highly heritable,⁵⁴ genotyping is particularly complex due to frequently co-occurring conditions. Although a proportion of autism is attributable to common variants, rare copy-number variants and protein-disrupting, single-nucleotide variants have also been shown to significantly contribute to the etiology.⁵⁵ The diagnostic relevance of genomewide small common and rare copy-number variants continues to provide evidence of the high diagnostic yield of microarray for genetic testing in autistic children.⁵⁶ These findings support the utility of enhancing access to genetic testing for autistic individuals. Research priorities that emerged were genetic counseling (n = 15, 63%), identifying genes linked to co-occurring conditions or treatment responses (n = 13, 54%), and addressing the autistic community’s concerns about genetics research and moving away from cure and cause research toward increasing quality of life (n = 12, 50%).

The neurodiversity movement challenges deficit-oriented conceptualizations of disability, reframing the disability as a valuable minority identity that does not require corrective treatment.⁵⁷ The neurodiversity movement has proliferated in recent decades, primarily across college campuses, as a means to promote the success of diverse learners. However, the majority of literature on neurodiversity has been largely conceptual, with limited efforts to adapt a neurodiversity approach to health care.⁵⁸ This perspective encourages the promotion of self-determination, advocacy, and decision-making among autistic individuals and is informed by autistic individuals themselves.

Research with nationally representative samples of autistic youth reveal profound developmental, educational, and health-related struggles in the transition to adulthood^38,59 As previously mentioned, these challenges are often because of, in part, systemic factors that impede their capacity to succeed and thrive.⁶⁰ Transition-related challenges occur across the lifespan for autistic individuals and represent important opportunities for intervention and support.

Our review of the literature revealed that translating research on physical health for autistic individuals into interventions is constrained by several factors. These include research with small samples, a limited quantity of existing interventions that target physical health promotion, and a lack of measurement strategies that capture multidimensional developmental outcomes.^46,61 

There is a well-established research base regarding the need for research and interventions that address health and health care disparities among marginalized and underserved autistic populations.^7,14,36 This includes a range of populations, including women, racial and ethnic minorities, and individuals from low socioeconomic backgrounds.

This paper presents the development of the AIR-P Research Agenda. Our agenda catalyzes autism research in currently underrepresented topic areas (eg, gender, sexuality, and reproductive health), particularly for autistic populations that experience disproportionate disparities. Our agenda adopts a neurodiversity orientation to health promotion for autistic individuals. This model contrasts with the traditional deficit-oriented medical model that emphasizes identifying a cure or pinpointing the etiology of autism at the expense of promoting well-being and thriving among autistic individuals in accordance with their self-reported needs, experiences, and priorities.

This agenda lays the foundation for research conducted within the AIR-P Network. Moving forward, the ARRB will collaborate with the Steering Committee in the continuous development and refinement of the overall research domains. In addition, there will be systematic efforts to catalog research that emerged during the first year of the AIR-P to ensure that priorities are representative of the current research and emerging trends. There will also be continuous consensus-building efforts to ensure alignment within the network.

The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. The AIR-P looks forward to addressing these critical research priorities and continuing to advance this research agenda as the network spurs research and innovation.

Abbreviations

AIR-P

Autism Intervention Research Network on Physical Health

ARRB

Autistic Researcher Review Board