Advancing Equitable Inpatient Psychiatric Access for Children With Autism Spectrum Disorder

J’s first appointment at our community clinic was conducted with the lights off. He was an affectionate middle schooler with autism spectrum disorder (ASD), epilepsy, and type 1 diabetes mellitus, and we adjusted the lighting to increase his ability to self-regulate so that a physical examination could be completed. J’s family moved to Massachusetts to be closer to our hospital because of his medical complexity yet still struggled with traveling to outpatient visits, resulting in discontinuity of care. Even with support from school, primary care, and subspecialists, physically aggressive behaviors, including hitting or kicking toward others, still led to emergency department (ED) visits, ED boarding, and inpatient psychiatric admissions to ensure safety for J and those around him. For patients like J, neurodevelopmental units are often the sole inpatient option. However, at the times J needed it the most, a bed was never available, and the wait for a neurodevelopmental unit bed to become available was weeks long. His family was left to manage his crises without the level of care and treatment recommended and sought by his medical teams. The most recent Centers for Disease Control and Prevention data reported that 1 in 31 children in the United States have a diagnosis of ASD. 1 In Massachusetts alone, there are over 28 000 children with a diagnosis of ASD—enough to fill 388 school buses. 2 Nationwide, the pediatric behavioral health crisis has grown so dire that the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, and the Children’s Hospital Association declared a national state of emergency in children’s mental health in 2021. 3 Furthermore, a lack of practitioners, unequal distribution of existing practitioners, inconsistent practitioner training, and the growing rates of behavioral health disorders in children have led to a gap between pediatric behavioral health diagnoses and delivered care. 4–8 As might be expected, emergency service use for behavioral health diagnoses9–11 and overall wait times have since worsened, especially in the pediatric population. 12, 13Autistic children are at higher risk for numerous conditions, particularly behavioral health disorders, 14, 15 and for presenting to the ED with psychiatric complaints such as conduct symptoms, anxiety, mood disorders, suicidal ideation or attempt, or intentional self-injurious behavior. 16 Children with ASD are 6 times more likely to utilize inpatient psychiatric care and to accrue more cumulative inpatient days at higher cost than nonautistic children or children with intellectual disability. 17, 18 Risk factors for psychiatric hospitalization include mood disorders, sleep disorders, single-parent homes, diagnoses of obsessive compulsive disorder or depression, and aggression. 19, 20 Autistic children often require treatment in specialized inpatient units called neurodevelopmental units. However, there are only approximately 20 neurodevelopmental units in the United States, 17 leaving many autistic children without definitive specialized care during a behavioral health crisis. Equitable access to practitioners and accommodations is essential for autistic children to receive the same standard of preventive care as their neurotypical peers. However, limitations in care for children with ASD continue to present significant barriers to the delivery of inclusive, high-quality care including availability of specialized inpatient units, inequities in funding, trained staff, staffing ratios, and geographic distribution in inpatient units, and gaps in community-based services. 21 This feature will review current structural challenges in the existing system and potential opportunities to improve care and outcomes for autistic children. Caring for patients with ASD in primary care has become a common occurrence and often requires creative adaptations to prevent overstimulation, address changes in routine, and reduce anxiety. However, pediatric trainees and interprofessional practitioners continue to report discomfort and inconsistent training around best practices for managing both the outpatient and inpatient care of autistic children. 4, 22–25Although primary care and community supports are critical, inpatient psychiatric care can be necessary to stabilize acute emotional and behavioral crises and maintain safety for autistic children and those around them. Typical inpatient psychiatric units, however, often deny admission to patients with ASD and/or comorbid medical complexity, as these units are not designed for the unique needs of children with ASD and often are limited in their ability to manage medical comorbidity. For these patients, placement in specialized neurodevelopmental units is often the only viable option. Few rigorous studies evaluating the care of autistic children in the inpatient and outpatient settings exist, as recently demonstrated in a review of the literature with limited inpatient or ED studies and small sample sizes. 26According to the Children’s Hospital Association, 41% of children’s hospitals nationally experienced a shortage of child and adolescent psychiatrists in 2024. 27 At the federal level, behavioral health–related spending represented only about 0. 2% of an approximately 6. 4 trillion United States federal budget for 2023. 28–30 At the institutional level, large inequities have been found between neurodevelopmental units funded by public insurance versus those by commercial sources; commercially funded units had longer average lengths of stay, raising concerns regarding whether care delivery differs based on funding source. 15A general inpatient psychiatric unit requires trained practitioners and staff who can care specifically for individuals experiencing symptoms related to psychiatric diagnoses; these units may be locked and able to provide limited medical care. 15, 31, 32 The interventions on an inpatient psychiatric unit are brief, requiring communication and insight that may not be appropriate to target the needs of children with ASD. 33, 34 For example, inpatient psychiatric units typically utilize verbal psychotherapeutic strategies, group therapy, and schedules, which may all be counterintuitive and less productive for autistic children specifically. 35 Furthermore, research has demonstrated that specialized units provide more effective care than general inpatient psychiatric units for children with ASD, intellectual disability, or developmental delay. 34Neurodevelopmental units are even more specialized, with higher staff ratios and additional practitioners such as child psychologists, psychiatrists, board-certified behavior analysts, speech therapists, and occupational therapists who are trained to work with autistic children. 15, 32 These units are based in applied behavioral analysis (ABA) principles36 using evidence-based approaches to define target behaviors, investigate their root causes, address perpetuating factors, and teach replacement behaviors and skills, which can be continued on an outpatient basis. 17 Studies have shown that these specialized inpatient units are effective in treating behavioral symptoms, 37 decreasing polypharmacy, 35 and decreasing repeat ED presentations. 33From an institutional perspective, staffing a neurodevelopmental unit can be difficult due to the unit’s high acuity, 15 with staff injury rates from patient assaults reaching 3 times those of other psychiatric units. 38, 39 Additional challenges include higher levels of burnout, stigma, and institutional or provider reluctance to work with this population. 15, 36, 38, 40, 41 Furthermore, crucial neurodevelopmental unit direct care staff positions are typically not well compensated, leading to difficulty with both recruiting and maintaining staff levels. 40Fewer than 10 neurodevelopmental units existed about 15 years ago, and the geographic distribution of these units was uneven, predominantly in the Northeast. 15 This number has now approximately doubled, showing increased recognition of the need for these units. 17 Although the state of Massachusetts has a large number of health care professionals and medical centers, there remains an inequity in access to both inpatient child and adolescent psychiatric and neurodevelopmental unit beds. An online search for inpatient child and adolescent psychiatric units within Massachusetts returned 14 institutions with over 300 beds. Of those, only 4 specifically mention accepting children with ASD, and there are currently only 2 pediatric neurodevelopmental units operating across the state. The reality is that the demand for neurodevelopmental unit beds remains extraordinary, but there are fewer than 300 beds nationwide. 17 The results are extended ED stays, repeated ineffective stays in units not designed for this population, or lack of access to necessary stabilization. 42While neurodevelopmental unit availability for acute crisis stabilization remains critically important, unit availability is only one piece of what should be a broader system of care for children with ASD. Sustained progress hinges on access to community-based services, such as school- or home-based supports, family training, ABA, Developmental, Individual-Differences, Relationship-Based/Floor Time (DIRFloortime), or cognitive behavioral therapy (CBT). These services address needs directly in the environments where children and families spend most of their time, but families continue to report limited availability and variable quality. 21 Additionally, billing data has demonstrated that longitudinal outpatient service delivery for greater than 7 weeks decreases overall psychiatric hospitalizations. 43Increased training is needed for specialized practitioners caring for children with ASD, such as primary care pediatricians, psychiatrists, and psychologists. Additionally, this training should be thoughtfully incorporated into pediatric residency programs as the expanded Accreditation Council for Graduate Medical Education ambulatory and mental health requirements are implemented for the next generation of pediatric practitioners. 44A multilevel system of care, including neurodevelopmental units, partial hospitalization programs, and intensive outpatient programs, should be supported by regulating agencies, practitioners, payers, and relevant government bodies. Robust lower levels of care can be effective in stabilizing or preventing less acute crises while avoiding the cost and disruption of a neurodevelopmental unit hospitalization. At all levels, staff should be recruited and trained with emphasis on this population’s unique needs and provided with additional supervision and resources to support retention to ensure continuity of units. Institutions should recognize the unique needs of this population, pursue policy and contractual arrangements with state Medicaid offices to support opening of neurodevelopmental units, and engage in contracting work with commercial insurers to support reimbursement rates that match the intensity of the staffing required to provide quality care. States should partner in de-identified Medicaid data collection to further explore and understand cost and outcome inequities, as this aggregate data can help elucidate differential access and service utilization that may be impacting care. Community-based therapeutic options such as ABA, DIRFloortime, and CBT should be affordable and readily accessible for autistic children. In the current system, requirements differ widely by state and insurer, leading to confusion and logistical barriers for families and services, particularly as many ABA agencies work in multiple states. There should be advocacy to align approval requirements for services such as ABA, possibly at the federal level. Furthermore, many services have long waiting lists, and families report variable service quality; therefore, guidelines should exist to ensure high-quality, standardized practices for these services. Explorative work should also be conducted to determine how best to match therapeutic options with individual patient needs to more efficiently allocate supports. As primary care professionals, our job is to keep all children we care for healthy and at home, where they can thrive. However, our current health care system is not adequately prepared to address the needs of a growing population of autistic children, especially those with co-occurring behavioral health conditions. To ensure effective support, we must develop comprehensive, integrated care systems tailored to varying levels of need. Increased, sustained community support is needed to decrease inpatient psychiatric and neurodevelopmental unit admissions for autistic children. In the meantime, safety must be prioritized through increased availability of neurodevelopmental units and robust support for unit staff. Meaningful and urgent investment in the continuum of care for children with ASD, including community and inpatient behavioral health care, is imperative to address this population’s needs. The authors would like to thank Mr Joshua Greenberg for his support of this project and manuscript, and J’s family for allowing us to share his story.