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ImportanceAn improved understanding of autism spectrum disorder (ASD) prevalence over time and across the lifespan can inform health care service delivery for the growing population of autistic children and adults.ObjectiveTo describe trends in the prevalence of ASD diagnoses using electronic records data from a large network of health systems in the US.Design, Setting, and ParticipantsThis cross-sectional study examined annual diagnosis rates in health records of patients in US health systems from January 1, 2011, to December 31, 2022. Eligible individuals were included in the study sample for a given calendar year if they were enrolled in a participating health system for at least 10 months out of the year. Data were extracted from 12 sites participating in the Mental Health Research Network, a consortium of research centers embedded within large, diverse health care systems.Main Outcome and MeasuresDiagnoses of ASD were ascertained using International Classification of Diseases, Ninth Revision (ICD-9) and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) revision codes. Annual diagnosis rates were calculated as the number of unique members diagnosed, divided by the total members enrolled.ResultsA total of 12 264 003 members were enrolled in 2022 (2 359 359 children aged 0 to 17 years [19.2%]; 6 400 222 female [52.2%]; 93 002 American Indian or Alaska Native [0.8%], 1 711 950 Asian [14.0%], 952 287 Black or African American [7.8%], 2 971 355 Hispanic [24.2%], 166 144 Native Hawaiian or Pacific Islander [1.4%], and 6 462 298 White [52.7%]). The ASD diagnosis rate was greatest among 5-to-8-year-olds throughout the study period and increased by 175% among the full sample, from 2.3 per 1000 in 2011 to 6.3 per 1000 in 2022. The greatest relative increase in diagnosis rate from 2011 to 2022 occurred among 26-to-34-year-olds (450%) and increases were greater for female vs male individuals among children (305% [estimated annual percentage change (EAPC), 13.62 percentage points; 95% CI, 12.49-14.75 percentage points] vs 185% [EAPC, 9.63 percentage points; 95% CI, 8.54-10.72 percentage points], respectively) and adults (315% [EAPC, 13.73 percentage points; 95% CI, 12.61-14.86 percentage points] vs 215% [EAPC, 10.33 percentage points; 95% CI, 9.24-11.43 percentage points]). Relative increases were greater in racial and ethnic minority groups compared with White individuals among children, but not adults.Conclusions and RelevanceIn this cross-sectional study of children and adults in the US, ASD diagnosis rates increased substantially between 2011 and 2022, particularly among young adults, female children and adults, and children from some racial or ethnic minority groups. Diagnosis prevalence trends generated using health system data can inform the allocation of resources to meet the service needs of this growing, medically complex population.
ImportanceAn improved understanding of autism spectrum disorder (ASD) prevalence over time and across the lifespan can inform health care service delivery for the growing population of autistic children and adults.ObjectiveTo describe trends in the prevalence of ASD diagnoses using electronic records data from a large network of health systems in the US.Design, Setting, and ParticipantsThis cross-sectional study examined annual diagnosis rates in health records of patients in US health systems from January 1, 2011, to December 31, 2022. Eligible individuals were included in the study sample for a given calendar year if they were enrolled in a participating health system for at least 10 months out of the year. Data were extracted from 12 sites participating in the Mental Health Research Network, a consortium of research centers embedded within large, diverse health care systems.Main Outcome and MeasuresDiagnoses of ASD were ascertained using International Classification of Diseases, Ninth Revision (ICD-9) and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) revision codes. Annual diagnosis rates were calculated as the number of unique members diagnosed, divided by the total members enrolled.ResultsA total of 12 264 003 members were enrolled in 2022 (2 359 359 children aged 0 to 17 years [19.2%]; 6 400 222 female [52.2%]; 93 002 American Indian or Alaska Native [0.8%], 1 711 950 Asian [14.0%], 952 287 Black or African American [7.8%], 2 971 355 Hispanic [24.2%], 166 144 Native Hawaiian or Pacific Islander [1.4%], and 6 462 298 White [52.7%]). The ASD diagnosis rate was greatest among 5-to-8-year-olds throughout the study period and increased by 175% among the full sample, from 2.3 per 1000 in 2011 to 6.3 per 1000 in 2022. The greatest relative increase in diagnosis rate from 2011 to 2022 occurred among 26-to-34-year-olds (450%) and increases were greater for female vs male individuals among children (305% [estimated annual percentage change (EAPC), 13.62 percentage points; 95% CI, 12.49-14.75 percentage points] vs 185% [EAPC, 9.63 percentage points; 95% CI, 8.54-10.72 percentage points], respectively) and adults (315% [EAPC, 13.73 percentage points; 95% CI, 12.61-14.86 percentage points] vs 215% [EAPC, 10.33 percentage points; 95% CI, 9.24-11.43 percentage points]). Relative increases were greater in racial and ethnic minority groups compared with White individuals among children, but not adults.Conclusions and RelevanceIn this cross-sectional study of children and adults in the US, ASD diagnosis rates increased substantially between 2011 and 2022, particularly among young adults, female children and adults, and children from some racial or ethnic minority groups. Diagnosis prevalence trends generated using health system data can inform the allocation of resources to meet the service needs of this growing, medically complex population.
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Background: Racially and ethnically minoritized autistic individuals face intersectional disparities in access to services and research representation. Prior work tends to overlook individual preferences, lived expertise, and the of language skills in services. To address this gap, this community-based participatory study examines the presence and correlates of services in minoritized autistic adolescents and adults varying in language skills. Method: Participants (N = 73, ages 13-30, >50% with language scores ≤ -1.25 SD and ~30% with NVIQ < 70 to 84) completed a behavioral assessment protocol. Participants and caregivers completed questionnaires. Descriptive and regression analyses evaluated patterns and predictors of number of services received, unmet needs, and barriers. Results: Participants received multiple services yet had multiple unmet service needs and barriers. Effects of individual differences and social-ecological variables on services received, unmet needs, and barriers varied in presence and magnitude when using a categorical versus continuous approach to individual differences. Implications: While the number of services received and unmet needs were similar to prior work, examination of individual services, unmet needs, and barriers suggested differences. Effects point to nuance in experiences during the transition to adulthood and motivate use of participatory approaches to build the evidence base informing practice and advocacy.
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