This editorial appears in the May Issue of the American Journal of Bioethics
In their Target Article “Inpatient Hospitalization of Adolescents Diagnosed with Autism Spectrum Disorder: An Ethical Analysis,” Hrycko and Sinderbrand argue that inpatient psychiatric hospitalization (“IPH”) creates lasting harms to autistic adolescents. They go on to state that autistic adolescents “are admitted to inpatient psychiatric units at an alarmingly high rate, yet the healthcare system lacks the appropriate training and resources to provide proper care.” The need for better training is echoed by many of the authors of the open peer commentaries in this issue. In this editorial, we argue that this goal not only improves beneficence toward these patients but also works toward greater autonomy and justice for this population of patients.
Rolison et al. and Swaminathan et al. call for improved training for clinicians caring for autistic patients. Such training is even more important in the setting of inpatient hospitalization compared to the outpatient setting. Recent studies confirm that medical students believe they have inadequate training to care for neurodivergent patients. This is within a broader context where medical students receive inadequate training to care for disabled patients. This lack of training continues into residency and beyond.
Yet, there are signs of hope. More and more medical schools are including elective disability training with over 50% of medical schools having some disability awareness training. The Hastings Center issued a brief in 2024 that outlines a number of recommendations in promoting anti-ableist medical education. Former Loyola medical students Emily Carnes, MD, Carla Hanna, MD, and Tyler Morad, MD at the Stritch School of Medicine (“SSOM”) created a disability health elective designed to enhance medical students’ comfort and communication with disabled patients and their overall understanding of disability and the various models of disability, from the medical model to the social model to the neurodiversity model. In creating this elective, they have involved the disability community to allow physicians and people with disabilities (PWD) an opportunity to communicate with one another and to elevate the voice of the community being served. This is, in fact, one of the suggestions made by Swaminathan et al. In their commentary, they assert that, “Incorporating the narratives and perspectives through collaboration with neurodivergent advocates would greatly improve understanding amongst providers and patients. This promotion of cultural humility would enable future conversations targeted toward bettering current care models and decreasing unnecessary escalation in emergency settings.”
The course at SSOM seeks to balance the principle of beneficence with the idea of dignity of risk, thus respecting autonomy and promoting social justice. The tension between these principles often tips into the direction of beneficence, especially in the world of adolescent medicine where the question of who gets to speak on behalf of an autistic adolescent may arise. Typically, parents or guardians make decisions for adolescents, using a best-interests standard while also giving weight to an adolescent’s assent or dissent. Exceptions to this, however, do exist, particularly when it comes to accessing mental health services with some states not requiring parental consent. A recent study published in JAMA Pediatrics found, however, that “Treatment use among adolescents … was significantly lower in states mandating caregiver consent”.
Wilkenfeld et al. state that “[a]utistic adolescents, like their neurotypical peers, may demonstrate full capacity for some decisions but not others.” Such a nuanced approach respects autistic adolescents as whole persons while also acknowledging that they may need greater support for certain kinds of decisions. Richman’s idea of having “autism experts by experience” is an excellent way to help support autistic adolescents in the healthcare setting. Like Swaminathan et al., Richman acknowledges the value of adapted care, if not concordant care, especially given that current assessment tools used in IPH are not appropriate or accurate in assessing autistic behavior. This same theme is also expressed by Chipman, who states, “A relational understanding of autonomy and care can enable a care team to reconfigure their outcomes and approach to attend to the needs of patients as co-creators and contributors to their healthcare process.”
Not only do medical students need better training in disability health. As Lucas-Griffin and Raju mention in their commentary, respite workers need better training as well. Respite workers, like many other workers who assist disabled and elderly individuals, are often poorly paid and may not be adequately trained in mental health. Providing better mental health training as well as training about the heterogeneity of autism to respite workers can improve their ability to provide greater support to autistic adolescents, hopefully as a means of preventing the need for IPH. Although autistic adolescents are often under the care of a parent or guardian, in some situations an autistic adolescent may be supported by a respite worker. Having a greater understanding of mental health and autistic adolescents may improve the healthcare experience, whether in the inpatient or outpatient setting.
In addition to improving education of those working with autistic adolescents who might have co-occurring mental health issues, a need for greater understanding of supported decision-making as it pertains to autistic adolescents is equally necessary to respect the dignity of autistic adolescents. Although supported decision-making is traditionally viewed as a tool to help support disabled adults with decision-making, the underlying rationale applies to autistic adolescents—providing them with as much decision-making authority as possible with the support of a parent, guardian, or other trusted adult. This model of decision-making can be applied in both the outpatient and inpatient setting. Schwartzman and Bettis have argued that identifying risks among autistic adolescents in the outpatient setting may prevent psychiatric hospitalizations, which is a goal that Hrycko and Sinderbrand would endorse.
Overall, the call for improved education at all levels, improved respect for autonomy, and improved programming for individuals with autism spectrum disorder is thoughtfully expressed in the target article by Hrycko and Sinderbrand along with the accompanying peer commentaries. Taken together, these proposed changes have the potential to improve outcomes by decreasing unnecessary reliance on inpatient psychiatric hospitalization and, ideally, reframe the judicious use of IPH as an ethical, patient-centered, value-added resource.
Nanette Elster, JD, MPH, Nathan Derhammer, MD, and Kayhan Parsi, JD, PhD, HEC-C