Autism Spectrum Disorders and the Healthcare Experiences of Aging Adults

Abstract

This qualitative, descriptive study illuminates the experiences of adults diagnosed with Autism Spectrum Disorders (ASD) and Intellectual Disabilities (ID) and their challenges and successes in receiving quality healthcare services. This population is challenged by a triple jeopardy of age, intellectual disability and autism symptomology (social/sensory/behavioral/communication challenges) and may experience negative health outcomes and suboptimal relationships with healthcare providers due to their communication deficits and behavioral impairments. Additionally, this population may suffer from increased morbidity and even premature death. Through semi-structured interviews with adults diagnosed with ASD and/or their guardians/caregivers, this study explored their perspectives and impressions of their healthcare experiences for 12 adults. In addition to their ASD diagnosis, many of the adults were impacted by major physical and mental health co-morbidities that require regular medical attention such as epilepsy, diabetes, sleep disturbances, depression, sedentary lifestyle and gastrointestinal problems. Individuals with developmental disabilities, such as ASD, often experience health issues associated with aging at earlier ages and at higher rates than the general population. The goals of this project were to understand how well their health care providers understand autism, including the sensory, behavioral, social and communication needs required of an adult with autism; explore their experience with how well their care is coordinated between primary health care and other specialty or ancillary services, and identify factors which could impact access to care; and to discover what other barriers (e.g. access to available health services, policy concerns, such as health insurance and residency location, advocacy, aging guardians and others) which may potentially influence the health for ASD adults. Some of the adults interviewed experienced negative health outcomes and suboptimal relationships with healthcare providers; others seemed to have very positive relationships, with good preventive care and monitoring of health. Clinical and communications accommodations were absolutely necessary to make healthcare provision more comfortable for this population of adults. Coordination of care was seen as an imperative, with most family members taking on this responsibility, with support from residential caregivers and some primary care physicians. Barriers to accessing healthcare services were identified, including insurance concerns. The societal and healthcare costs of adults with ASD/ID are growing and are anticipated to be significant. This challenge will likely be further exacerbated given there are few trained healthcare providers who are prepared or dedicated to serve this population. Continuing to deepen the healthcare industry's understanding of the characteristics and circumstances that enable these positive relationships and successful outcomes will be critical in the future.