In 1996, the Institute of Medicine adopted the following definition of primary care: the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of family and community.1 On the basis of our previous work in the Health Care Transitions Research Network, we know that young autistic adults and their families struggle to find adult primary care providers who understand their needs.2,3 The overall goals of health and health care are to increase lifespan and maximize quality of life. Primary care for autistic adults needs to improve for them to attain these goals.
Autistic adults have a significantly higher prevalence of common chronic medical conditions, including dyslipidemia, hypertension, diabetes, obesity, and thyroid disease.4 However, despite an increased need for health services in this population, autistic individuals are faced with health care barriers from childhood to adulthood, which limit their access to high-quality primary and preventive care* services throughout the life course.
Both autistic children and older youth have higher levels of health service use, including a higher percent of pediatrician visits, specialty care services, and inpatient hospitalizations, compared to non-autistic individuals. Interestingly, despite this increased contact with the health care system, autistic children are less likely to have received important preventive health services including immunizations for influenza and other vaccinations.5 In addition to receiving fewer vaccines in childhood, autistic individuals continue to face barriers in access to care as adults. Autistic adults report significantly higher odds of unmet health care needs related to physical health and mental health, compared to non-autistic adults.6 Furthermore, although autistic adults are as likely as non-autistic adults to have a primary care provider, they are less likely to have received a tetanus vaccine, and, if female, less likely to have received cervical cancer screening in the past 3 years. Beyond vaccination and cervical cancer screening, little is known about the use and access of autistic individuals to other routine guideline-driven preventive services such as colon cancer and breast cancer screening.
The deficit in primary and preventive care services faced by autistic individuals, as well as the increased prevalence of various chronic medical conditions is related to a combination of both provider discomfort with treating autistic individuals as well as autism-specific barriers such as communication deficits, which pose a challenge for delivery of care through conventional models of medical practice. In a study on the patient experience, autistic patients experienced heightened anxiety when communicating with the physician, during the physical exam, and while in the waiting room. These difficulties could be alleviated by preplanning individualized accommodations to overcome environmental and process barriers such as rooming the patient immediately and not performing vital signs at the time of intake.7 Such interventions may help improve clinic visits as well as the patient-doctor interaction.
Further interventions are needed to bridge the existing gaps in primary and preventive care and to address the increased prevalence of chronic health conditions in autistic individuals. Future directions should include research on differences in access to routine guideline-driven preventive health services such as colon and breast cancer screening, as well as further evaluation of the origin of the disparities in access to care faced by autistic individuals. Care for autistic individuals should incorporate guideline-driven practices provided to the general population in addition to personalized accommodations to improve delivery of care.
In this commentary and all of our Autism Intervention Research Network on Physical Health related materials, the terms preventive care, preventive health, and preventive medicine all specify the prevention of acute infections or chronic diseases such as cardiovascular disease or cancer. They will never be meant to prevent the condition of autism.
Drs Kuo and Torrest conceptualized and designed the commentary, drafted the manuscript, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: This project is supported by the Health Resources and Services Administration of the US Department of Health and Human Services under the Autism Intervention Research Network on Physical Health grant UT2MC39440. The information, content and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by the Health Resources and Services Administration, the US Department of Health and Human Services, or the US government. The funder/sponsor did not participate in the work for this article.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest relevant to this article to disclose.