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(SDAR) Characterizing the Health and Healthcare Utilization of Girls with Autism Spectrum Disorder in Florida

Project profile

Institution: University of Florida
Principal Investigator: Amber M Angell
Project Number: R41MC33088
Project Date: 09-01-2019

Age Group(s)

  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • African American
  • Hispanic/Latino
  • Asian/Pacific Islander
  • Native American/Alaskan Native
  • Low-income
  • Rural
  • Special Health Care Needs


Girls with autism spectrum disorders (ASD) are an understudied group. Although the 4:1 male to female ASD prevalence ratio likely has some genetic causes experts increasingly agree that it is also due to the under-ascertainment of girls. Because most ASD research has been conducted with males little is known about ASD symptomatology among females who are diagnosed later than boys. Even less is known about the healthcare needs of girls with ASD despite emerging evidence that they have unique risk profiles for co-occurring medical and behavioral conditions. Children with ASD as a group experience high rates of co-occurring conditions e.g. psychiatric gastrointestinal and neurological which require specialized medical care. Children with ASD as a group use more healthcare at higher cost than children with other special healthcare needs but they have more unmet healthcare needs. These disparities are even greater for children with ASD from racial and ethnic minority groups and those who live in rural areas. Very little is known however about the healthcare utilization of girls with ASD especially from underserved groups. Girls with ASD appear to 'camouflage ' or mask their symptoms which may lead to the underidentification of co-occurring conditions. There is a critical need to study the healthcare needs experiences and utilization patterns of girls with ASD. We aim to address this critical gap by using the OneFlorida Data Trust a repository of Florida statewide electronic health record (HER) data and Medicaid administrative records which includes health data for 74% of all Floridians. The racial ethnic and geographicdiversity of Florida the third most populous state in the U.S. make it ideal for this project. The overarching goal of this secondary data analysis project is to characterize the health and healthcare utilization of girls with ASD ages 2 to 21 over a six-year period. To achieve this goal we will: 1) Characterize the frequency and type of co-occurring medical and behavioral conditions of girls with ASD and 2) Compare the patterns of healthcare utilization (subspecialty and primary care visits medication prescription and dispensing ED visits hospitalizations) of girls and boys with ASD in Florida. The findings will serve as a foundation to design implement and disseminate quality improvement initiatives across our extensive team networks to enhance access to healthcare and mental health services for this understudied and underserved population.


Angell AM, Deavenport-Saman A, Yin L, et al. Sex Differences in Co-occurring Conditions Among Autistic Children and Youth in Florida: A Retrospective Cohort Study (2012-2019). Journal of Autism and Developmental Disorders. 2021 Oct;51(10):3759-3765 DOI:10.1007/s10803-020-04841-5. October 2021 33394250.