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Understanding Gender Dysphoria among Adolescents with ASD

Grantee: Seattle Children's Hospital
Principal Investigator: Laura Richardson
Project Number: R41MC42490
Project Date: 9/1/2021

Age group(s)

  • Adolescence (12-18 years)

Abstract

Research shows that Autism Spectrum Disorder (ASD) and gender dysphoria co-occur more often than by chance. Recent studies suggest that the incidence of ASD is nearly six times higher among youth referred to gender clinics, and the incidence of gender concerns are over seven times higher among youth with ASD, compared to their respective prevalence in the general population (7.8% vs. 0.9-1.8% for ASD; 5.4% vs. 0.7% for GD).1-6 Youth with each of these diagnoses have also been shown to be at greater risk for experiencing a number of mental health comorbidities, including but not limited to, anxiety, depression, eating disorders, self-harm, and suicidality.7-10 However, most existing research on co-occurring ASD and GD in youth has used case studies and clinical convenience samples, which limits both generalizability and the ability to consider additional comorbidities, particularly as it relates to these common mental health comorbidities. Therefore, investigating these associations using a large database is critical to understand the public health impact of these conditions and can inform the development of appropriate services and supports. Accordingly, the goal of this project is to better understand associations between ASD, GD, and mental health comorbidities among U.S. populations of youth aged 9-18 using data from PEDSnet, a large database that includes comprehensive health information for over six million U.S. youth from eight children's hospital networks. We hypothesize that youth with an ASD diagnosis will be significantly more likely to have a GD diagnosis compared to those without an ASD diagnosis and that those youth with co-occurring ASD and GD will be more likely to experience other mental health comorbidities compared to peers with one or neither of these conditions. Furthermore, given the barriers and inequities youth with ASD experience in accessing specialty care for a variety of conditions,11, 12 we further hypothesize that the mean age at GD diagnosis among those with co-occurring ASD and GD will be higher than among those with GD alone, suggesting delays in care. The analyses will address the following specific aims: Aim 1: To examine the prevalence of co-occurring ASD and GD diagnoses among youth aged 9-18. Aim 2: To identify disparities in GD diagnosis among those with an ASD diagnosis that may be targets for systems-based interventions. Aim 3: To investigate the association between co-occurring ASD and GD diagnoses and further mental health comorbidities. The results of these analyses will fill a gap in the literature by documenting health disparities of this notably understudied and underserved population. In addition to guiding future research, these findings will help reduce disparities by 1) promoting improved screening and detection of ASD and gender concerns in specialty clinics and underserved communities, and 2) informing the design of targeted resources for youth at the intersection of ASD and GD so they can live as their authentic selves.

Publications

Listed is descending order by year published.

Kahn NF, Sequeira GM, Reyes V, Garrison MM, Orlich F, Christakis DA, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata N, Nokoff NJ, Voss RV, Richardson LP. Mental health of youth with Autism Spectrum Disorder and gender dysphoria. Pediatrics. 2023; 152(6):e2023063289.

Kahn, Nicole F., et al. “Co-Occurring Autism Spectrum Disorder and Gender Dysphoria in Adolescents.” Pediatrics (Evanston), vol. 152, no. 2, 2023, p. 1–, https://doi-org.ezproxyhhs.nihlibrary.nih.gov/10.1542/peds.2023-061363.


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