Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI‐CART Study

The objective of this study was to establish a large, densely sampled, U.S. population‐based cohort of people with autism spectrum disorder (ASD). The Rhode Island Consortium for Autism Research and Treatment (RI‐CART) represents a unique public‐private‐academic collaboration involving all major poi...

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Published in:	Autism research Vol. 13; no. 3; pp. 474 - 488
Main Authors:	McCormick, Carolyn E. B., Kavanaugh, Brian C., Sipsock, Danielle, Righi, Giulia, Oberman, Lindsay M., Moreno De Luca, Daniel, Gamsiz Uzun, Ece D., Best, Carrie R., Jerskey, Beth A., Quinn, Joanne G., Jewel, Susan B., Wu, Pei‐Chi, McLean, Rebecca L., Levine, Todd P., Tokadjian, Hasmik, Perkins, Kayla A., Clarke, Elaine B., Dunn, Brittany, Gerber, Alan H., Tenenbaum, Elena J., Anders, Thomas F., Sheinkopf, Stephen J., Morrow, Eric M.
Format:	Journal Article
Language:	English
Published:	Hoboken, USA John Wiley & Sons, Inc 01-03-2020 Wiley Subscription Services, Inc
Subjects:	Adolescent Adult Age Autism autism spectrum disorder Autism Spectrum Disorder - epidemiology Autism Spectrum Disorder - physiopathology Autism Spectrum Disorder - psychology Child Child, Preschool Cohort Studies Collaboration Comorbidity Consortia Demographics Demography Diagnosis Diagnostic systems Female female autism Females Geographic information systems Humans Infant Male Middle Aged Pediatrics Population population study Prevalence Registries registry Rhode Island - epidemiology Schedules Social Behavior Young Adult Rhode Island United States > US population study registry comorbidity autism spectrum disorder female autism
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Summary:	The objective of this study was to establish a large, densely sampled, U.S. population‐based cohort of people with autism spectrum disorder (ASD). The Rhode Island Consortium for Autism Research and Treatment (RI‐CART) represents a unique public‐private‐academic collaboration involving all major points of service for families in Rhode Island affected by ASD. Diagnosis was based on direct behavioral observation via the Autism Diagnostic Observation Schedule, Second Edition. For the first 1,000 participants, ages ranged from 21 months to 64 years. Using Geographic Information System and published prevalence rates, the overall cohort is estimated to represent between 20% and 49% of pediatric age persons in Rhode Island with ASD, with demographics representative of U.S. Census. We observed a high rate of co‐occurring medical and psychiatric conditions in affected individuals. Among the most prominent findings of immediate clinical importance, we found that females received a first diagnosis of ASD at a later age than males, potentially due to more advanced language abilities in females with ASD. In summary, this is the first analysis of a large, population‐based U.S. cohort with ASD. Given the depth of sampling, the RI‐CART study reflects an important new resource for studying ASD in a representative U.S. population. Psychiatric and medical comorbidities in ASD constitute a substantial burden and warrant adequate attention as part of overall treatment. Our study also suggests that new strategies for earlier diagnosis of ASD in females may be warranted. Autism Res 2020, 13: 474–488. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary The Rhode Island Consortium for Autism Research and Treatment (RI‐CART) represents a unique public‐private‐academic collaboration involving all major points of service for families in Rhode Island affected by autism spectrum disorder (ASD). In this article, we provide results from the first 1,000 participants, estimated to represent >20% of affected families in the state. Importantly, we find a later age at first diagnosis of ASD in females, which potentially calls attention to the need for improved early diagnosis in girls. Also, we report a high rate of co‐occurring medical and psychiatric conditions in affected individuals.
Bibliography:	Current addresses: Carolyn E. B. McCormick, Department of Human Development and Family Studies, Purdue University, West Lafayette, Indiana. Lindsay M. Oberman, Center for Neuroscience and Regenerative Medicine, Henry M. Jackson Foundation for the Advancement of Military Medicine, Rockville, Maryland. ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 Current addresses: Department of Human Development and Family Studies, Purdue University, West Lafayette, IN (C.E.B.M.); Center for Neuroscience and Regenerative Medicine, Henry M. Jackson Foundation for the Advancement of Military Medicine, Rockville, MD (L.M.O.) Carolyn E.B. McCormick and Brian C. Kavanaugh contributed equally to this manuscript.
ISSN:	1939-3792 1939-3806
DOI:	10.1002/aur.2261