Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities
The Lancet Child & Adolescent Health. 2023-12-01; 7(12): 897-908
DOI: 10.1016/s2352-4642(23)00221-3
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https://www.bordeaux-neurocampus.fr/12457
Lai MC(1), Amestoy A(2), Bishop S(3), Brown HM(4), Giwa Onaiwu M(5), Halladay
A(6), Harrop C(7), Hotez E(8), Huerta M(9), Kelly A(10), Miller D(11), Nordahl
CW(12), Ratto AB(13), Saulnier C(14), Siper PM(15), Sohl K(16), Zwaigenbaum
L(17), Goldman S(18).
Author information:
(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: .
Comment in
Lancet Child Adolesc Health. 2024 Mar;8(3):e5. doi:
10.1016/S2352-4642(23)00344-9.
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.
Copyright © 2023 Elsevier Ltd. All rights reserved.
DOI: 10.1016/S2352-4642(23)00221-3
PMID: 37973254 [Indexed for MEDLINE]
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.