Autism Spectrum Disorder and Medical Complexity: A Sum Greater Than Its Parts

Children with medical complexity (CMC) are a heterogeneous population1 with numerous comorbidities emerging over time.2 Autism spectrum disorder (ASD) may be an unfamiliar archetype of medical complexity; however, children with ASD often have profiles mirroring CMC, namely severe chronic conditions and functional limitations leading to high health care use and service needs.3,4 When children with ASD have co-occurring intellectual disability, health care costs are especially high.5 Using all-payer claims data from 3 states, ASD was identified in approximately 9% of CMC.6 ASD is more common in children with severe cerebral palsy,7,8 and a small study observed that ASD may have been present in up to two-thirds of children assisted by invasive mechanical ventilation.9 Although CMC prevalence is estimated to be between 0.5% and 11% of children,10 and ASD prevalence is estimated at 2.8%,11 the population-based prevalence of overlap and its impact is unknown.In this issue of Pediatrics, Smith et al address this knowledge gap by quantifying medical complexity and ASD overlap and the striking association with greater health care expenditures when the conditions occur together.12 Using data from 2 national surveys—the National Survey of Children’s Health (NSCH) and the Medical Expenditure Panel Survey (MEPS)—Smith et al calculated the frequencies of having medical complexity or ASD alone or medical complexity with ASD. About 35% to 40% of CMC had ASD, and this group’s expenditure accounted for approximately 50% of all CMC expenditures. Although approximately 18% to 60% of children with ASD had medical complexity (depending on medical complexity definition), this group’s expenditure accounted for approximately 77% of all ASD expenditures. In the absence of a universal definition of medical complexity, the exact prevalence of overlap will be imprecise; however, a key takeaway is that ASD and medical complexity often occur together.Estimates of this intersectionality may be conservative. Most clinicians caring for CMC are pediatricians,13 and diagnosing ASD in children with neurologic impairment or comorbidities affecting social and communication abilities largely falls beyond the scope of general practice. Known disparities in ASD diagnosis are attributed in part to uneven geographic distribution of diagnostic centers, community stigma, structural racism, and provider bias.14,15 Diagnostic overshadowing, ie, biased attribution of signs and symptoms to an existing diagnosis rather than a new condition, often affects children with ASD.16,17 Clinicians caring for children with ASD may overly attribute new concerns to ASD rather than different conditions. Clinicians caring for CMC may also overattribute sociocommunication challenges to primary diagnoses. Greater recognition could lead to more diagnoses and reporting in surveys and administrative data.Children, families, and health systems dealing with the combination of ASD and medical complexity face several potentially cascading consequences. Burden on families caring for either condition is substantial,18,19 and the uniquely high expenditures of the intersecting population suggests compounding strain as families navigate the web of services needed to adequately address their needs. Common to both groups, families often have to stop work to meet caregiving demands, eg, daily medical and behavioral treatments, clinic visits, therapies, and alternative education arrangements.5,20 Many caregivers establish their own unfunded,5,21 invisible health systems at home,22 with unrealistic or unsafe caregiving requirements to which they must adapt.23,24 Systems of care, particularly for children transitioning into adult systems, are especially complicated for families to manage without support, resulting in service gaps.25,26 Although caregiving results in many positive experiences, the magnitude of challenges suggests that more efficient, family-centered models that promote family resilience and address stress is an important priority.The Smith et al study has important implications for pediatricians because children and families stand to gain from greater identification of overlap. To avoid diagnostic overshadowing, the threshold for diagnostic referral to an ASD expert should be low in the face of compatible signs and symptoms. The advantage of an ASD diagnosis for CMC can include access to autism-specific intervention services that benefit caregivers and children.27,28 For example, Applied Behavior Analysis therapy is a covered benefit under the Early and Periodic Screening, Diagnostic, and Treatment program in all 50 states. Pediatricians should advocate for funding and workforce expansion to reduce access disparities for effective ASD services.14 Simultaneously, although there is no test to diagnose medical complexity in clinical care, pediatricians caring for children with severe ASD might apply strategies frequently used by complex care programs, such as care mapping, shared care planning, crisis action planning (eg, adapted to address challenging behaviors), and developing strong ties to collaborate with community and education systems.29–32 In fact, crisis action planning is a need identified in ASD research.33,34The Smith et al study encourages us to consider how innovative care models for CMC and for children with ASD can be designed to benefit children, families, and health systems. The health home concept promoted in the 2019 Advancing Care for Exceptional Kids Act, in which severe ASD is a listed example of an applicable chronic condition, is one strategy to enhance care coordination for CMC enrolled in Medicaid. Health home services include comprehensive care and coordination, access to the full range of pediatric subspecialty services, comprehensive transition care, patient and family support, referrals to community and social support, and use of health information technology to link services.However, intersectionality is complicated. Simply adding what works for CMC to what works for children with ASD may not yield an effective approach for children with both conditions.35 This population might require unique approaches. Learning collaboratives among ASD practitioners, general pediatrics, and complex care providers might yield a productive framework for testing the feasibility, acceptability, and impact of sharing care practices between ASD- and CMC-focused clinics. Existing programs to enhance primary care for children with ASD using the ECHO model (extension for community healthcare outcomes)36 could be adapted to integrate complex care for greater shared learning. Amidst these unknowns, the research of Smith et al inspires several exciting clinical and research directions that ultimately benefit children with ASD and medical complexity.