Autism and Medical Complexity Among Children in the United States.

Abstract

Background and objectives: Ongoing systems-level changes aim to better identify and remedy the unmet health care needs of children with medical complexity (CMC). In tandem, home- and community-based services are expanding to support autistic children and their families. Despite the potential for overlap, CMC and autistic children are treated independently in services, research, and policy. We estimated the overlapping prevalence of CMC and autism among US children and health care expenditures for autistic CMC in comparison with other children.

Methods: We analyzed 2 national cross-sectional surveys: the National Survey of Children's Health (NSCH; 2017-2018, 2019-2022, and 2021-2022) and the Medical Expenditures Panel Survey (MEPS; combined 2010-2021), selecting for children aged 0 to 17 years. CMC were defined using 2 different algorithms varying in stringency.

Results: In the most recent 2021 to 2022 NSCH (n = 103 748), the prevalence of CMC among autistic children was 59.28% (95% CI, 55.61%-62.84%) using one algorithm and 17.56% (95% CI, 14.41%-21.24%) using the more stringent algorithm. Forty-one percent of CMC were autistic using either algorithm. In the MEPS data (n = 55 637), autistic CMC had significantly greater median health care expenditures compared with other CMC and other autistic children.

Conclusions: There is extensive overlap of CMC and autism among children in the United States. When medical complexity and autism are both evident, expenditures are significantly higher than for either category alone. Despite this overlap and the associated high need, CMC and autism are generally treated as separate groups in services, research, and policy. These findings underscore the importance of cohesively understanding service needs across CMC, autistic children, and their caretakers.