Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities

Meng-Chuan Lai¹, Anouck Amestoy², Somer Bishop³, Heather M Brown⁴, Morénike Giwa Onaiwu⁵, Alycia Halladay⁶, Clare Harrop⁷, Emily Hotez⁸, Marisela Huerta⁹, Amy Kelly¹⁰, Dylan Miller¹¹, Christine Wu Nordahl¹², Allison B Ratto¹³, Celine Saulnier¹⁴, Paige M Siper¹⁵, Kristin Sohl¹⁶, Lonnie Zwaigenbaum¹⁷, Sylvie Goldman¹⁸

Affiliations

¹ Child and Youth Mental Health Collaborative at the Centre for Addiction and Mental Health and The Hospital for Sick Children, Toronto, ON, Canada; Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, ON, Canada; Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, UK; Department of Psychiatry, National Taiwan University Hospital and College of Medicine, Taipei, Taiwan.
² Centre for Autism Spectrum Disorders, Aquitaine Institute for Cognitive and Integrative Neurosciences, Charles Perrens Hospital, University of Bordeaux, Bordeaux, France.
³ Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, CA, USA.
⁴ Faculty of Education, University of Alberta, Edmonton, AB, Canada.
⁵ Autistic Women & Nonbinary Network, Lincoln, NE, USA; Rice University Center for the Study of Women, Gender, and Sexuality, School of Humanities, Houston, TX, USA.
⁶ Autism Science Foundation, Scarsdale, NY, USA; Department of Pharmacology and Toxicology, Rutgers University, Piscataway, NJ, USA.
⁷ Department of Health Sciences and TEACCH Autism Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
⁸ David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA, USA.
⁹ Felicity House, New York, NY, USA; Weill Cornell Medicine, New York, NY, USA.
¹⁰ Devereux Advanced Behavioral Health, Villanova, PA, USA.
¹¹ Auxiliary Enterprises, University of Massachusetts, Amherst, MA, USA.
¹² Department of Psychiatry and Behavioral Sciences and MIND Institute, University of California at Davis, Davis, CA, USA.
¹³ Center for Autism Spectrum Disorders, Division of Neuropsychology, Children's National Hospital, Washington, DC, USA.
¹⁴ Neurodevelopmental Assessment and Consulting Services, Decatur, GA, USA.
¹⁵ Seaver Autism Center for Research and Treatment, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁶ ECHO Autism Communities, Department of Child Health, University of Missouri School of Medicine, Columbia, MO, USA.
¹⁷ Department of Pediatrics, University of Alberta, Edmonton, AB, Canada.
¹⁸ Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA. Electronic address: sg3253@cumc.columbia.edu.

PMID: 37973254
DOI: 10.1016/S2352-4642(23)00221-3

Review

Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities

Meng-Chuan Lai et al. Lancet Child Adolesc Health. 2023 Dec.

. 2023 Dec;7(12):897-908.

doi: 10.1016/S2352-4642(23)00221-3.

Authors

Affiliations

¹ Child and Youth Mental Health Collaborative at the Centre for Addiction and Mental Health and The Hospital for Sick Children, Toronto, ON, Canada; Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, ON, Canada; Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, UK; Department of Psychiatry, National Taiwan University Hospital and College of Medicine, Taipei, Taiwan.
² Centre for Autism Spectrum Disorders, Aquitaine Institute for Cognitive and Integrative Neurosciences, Charles Perrens Hospital, University of Bordeaux, Bordeaux, France.
³ Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, CA, USA.
⁴ Faculty of Education, University of Alberta, Edmonton, AB, Canada.
⁵ Autistic Women & Nonbinary Network, Lincoln, NE, USA; Rice University Center for the Study of Women, Gender, and Sexuality, School of Humanities, Houston, TX, USA.
⁶ Autism Science Foundation, Scarsdale, NY, USA; Department of Pharmacology and Toxicology, Rutgers University, Piscataway, NJ, USA.
⁷ Department of Health Sciences and TEACCH Autism Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
⁸ David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA, USA.
⁹ Felicity House, New York, NY, USA; Weill Cornell Medicine, New York, NY, USA.
¹⁰ Devereux Advanced Behavioral Health, Villanova, PA, USA.
¹¹ Auxiliary Enterprises, University of Massachusetts, Amherst, MA, USA.
¹² Department of Psychiatry and Behavioral Sciences and MIND Institute, University of California at Davis, Davis, CA, USA.
¹³ Center for Autism Spectrum Disorders, Division of Neuropsychology, Children's National Hospital, Washington, DC, USA.
¹⁴ Neurodevelopmental Assessment and Consulting Services, Decatur, GA, USA.
¹⁵ Seaver Autism Center for Research and Treatment, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁶ ECHO Autism Communities, Department of Child Health, University of Missouri School of Medicine, Columbia, MO, USA.
¹⁷ Department of Pediatrics, University of Alberta, Edmonton, AB, Canada.
¹⁸ Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA. Electronic address: sg3253@cumc.columbia.edu.

PMID: 37973254
DOI: 10.1016/S2352-4642(23)00221-3

Abstract

Emerging evidence suggests that the higher prevalence of autism in individuals who are assigned male than assigned female at birth results from both biological factors and identification biases. Autistic individuals who are assigned female at birth (AFAB) and those who are gender diverse experience health disparities and clinical inequity, including late or missed diagnosis and inadequate support. In this Viewpoint, an international panel of clinicians, scientists, and community members with lived experiences of autism reviewed the challenges in identifying autism in individuals who are AFAB and proposed clinical and research directions to promote the health, development, and wellbeing of autistic AFAB individuals. The recognition challenges stem from the interplay between cognitive differences and nuanced or different presentations of autism in some AFAB individuals; expectancy, gender-related, and autism-related biases held by clinicians; and social determinants. We recommend that professional development for clinicians be supported by health-care systems, professional societies, and governing bodies to improve equitable access to assessment and earlier identification of autism in AFAB individuals. Autistic AFAB individuals should receive tailored support in education, identity development, health care, and social and professional sense of belonging.

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Conflict of interest statement

Declaration of interests M-CL has received research funding support from the Canadian Institutes of Health Research Sex and Gender Science Chair (GSB 171373), and editorial honorarium from SAGE Publications. SB has received royalties from Western Psychological Services for sales of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), consulting fees from Janssen, and honoraria for trainings on best diagnostic practices for autism, as well as trainings on use of the ADOS-2 and the Autism Diagnostic Interview-Revised (ADI-R). MGO is supported by the Ford Foundation and Next for Autism. AH is an employee of the Autism Science Foundation, has received honoraria for serving as a reviewer for the US Centers for Disease Control and Prevention, has received travel support from Emory University, serves as the Chair of a Data Safety Monitoring Board for a project at Drexel University, and is a member of both the Phelan McDermid Syndrome Foundation and the Interagency Autism Coordinating council (both unpaid). CH has received research funding support from the US National Institute of Child and Human Development, US National Center for Advancing Translational Sciences, the Eagles Autism Foundation, the Autism Science Foundation, and the Organization for Autism Research, and has received honoraria for serving as a reviewer for the US National Institutes of Health and US Department of Defense. CWN has received research funding support from the US National Institute of Mental Health (R01MH127046). ABR has received research funding support from the US National Institute of Mental Health (R01MH10028–12). CS has received royalties from Pearson Assessments for the Vineland Adaptive Behavior Scales, Third Edition and Wiley for two books related to autism and adaptive behaviour. KS has received research funding support from the US National Institutes of Health, Department of Defense, Missouri Department of Mental Health, Autism Speaks, and Cognoa; grants or contracts from the American Board of Pediatrics, University of Idaho, and University of New Mexico; consulting fees from Autism Navigator and Quadrant Biosciences; honoraria from WebMD/Medscape; payment for expert testimony from Missouri Board of Healing Arts; and has a leadership or fiduciary role in the American Academy of Pediatrics. LZ has received funding support from the Stollery Children's Hospital Foundation Chair in Autism. All other authors declare no competing interests.

Comment in

Better measures needed to mitigate sex bias in autism identification.
Burrows CA, Zheng S. Burrows CA, et al. Lancet Child Adolesc Health. 2024 Mar;8(3):e5. doi: 10.1016/S2352-4642(23)00344-9. Lancet Child Adolesc Health. 2024. PMID: 38360017 Free PMC article. No abstract available.

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Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities

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Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities

Authors

Affiliations

Abstract

Conflict of interest statement

Comment in

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