The Impact of the Environment on Primary Care for Individuals with Autism

Background: Primary care provides health promotion, disease prevention, health maintenance, counseling, patient education, diagnosis and treatment of acute and chronic illnesses in a variety of health care settings. Providers of primary care play a large role in the health-related care of individuals with autism spectrum disorder (iASD). Although iASD are reported to engage in a greater number of health care encounters compared to their neurotypical peers, these encounters are often fraught with difficulties that impact the provision of effective healthcare. Strategies to support the provision of primary care for iASD often focus on person factors, with less consideration of environmental impact. As recognized by the International Classification of Functioning, Disability, and Health (ICF), the environment has the potential to facilitate or constrain function of individuals. As defined by the ICF, environmental factors include the physical, social, attitudinal, and political/system environments in which people live and conduct their lives.

Objectives: The purpose of this study was to describe the environmental barriers and facilitators impacting primary medical care for iASD across the lifespan.

Methods: A scoping review was conducted using systematic methodology. Eleven databases were searched using the keywords “primary/health/medical care,” and “autism.” Inclusion criteria included: (1) studies exploring primary medical care experiences/challenges, (2) participants were iASD, caregivers, or primary care providers, (3) published in a peer-reviewed journal, (4) written in English in the last 10 years. Reported factors were characterized into the following ICF environmental categories: (a) products and technology, (b) natural and human-made environment, (c) support, (d) attitudes, and (e) services, systems and policies.

Results: The search yielded 11 articles meeting all inclusion criteria; 4 focused on adults while 7 examined pediatric populations. Studies were surveys (n=5), qualitative interviews/focus groups (n=4), and interventions (n=2).

Articles indicate that challenges exist for iASD in regard to primary medical care in all five ICF environmental categories. For example, communication difficulties arose frequently during visits, but success with pictorial, graphic, and assistive and augmentative communication products and technology were reported. The design of the waiting and medical rooms were also named as challenges; however, individualized modifications to the built and sensory environments were reported to contribute to successful encounters. A lack of support was described with family support services and disability services reported to be difficult to obtain, but when accessed led to positive experiences. Provider acceptance of ASD stereotypes and a lack of respect for parents were common barriers to care; care was facilitated when providers treated parents as experts and partnered with them in decision-making (attitudes). Health systems and policychallenges were diverse, but included a necessity for longer duration visits, timely care, and negation of financial disincentives.

Conclusions: Individuals with ASD experience great challenges in the access to and provision of primary care. This information has the potential to improve patient-centered care for this population by helping professionals identify priorities for efforts to address the primary care-related needs of this population. Strategies to best serve iASD should aim to adapt all five aspects of the environment as delineated in the ICF.