Affirming Care for Autism and Gender Diversity

Across the United States, an estimated 1 in 32 children and adolescents (hereafter, “youth”) has autism spectrum disorder (ASD),¹ making the diagnosis one that practicing pediatricians encounter on a near-daily basis. Similarly, many American youth—approximately 1 in 71, according to a recent national report²—identify as transgender and gender diverse (TGD). Research increasingly shows an overlap between ASD and TGD identification. Youth with ASD are more likely to identify as TGD than neurotypical youth,^3,4 and similarly, people who identify as TGD are more likely to have ASD than cisgender individuals.^5–7

In this issue of Pediatrics, Kahn et al report findings from one of the largest pediatric cohort studies to date to closely examine this association.⁸ Using electronic health record information from the PEDSnet database (which compiles data from 8 US large pediatric hospital systems), the authors identified 40 713 youth aged 9 to 18 (mean age, 13.6) years diagnosed with ASD between 2009 and 2022. Among these youth, 1.1% also had information in their medical record suggesting that they identified as TGD; among 879 155 youth without ASD, this percentage was 0.6%. After adjusting for other factors, youth with ASD were 3 times more likely than youth without ASD to have clinical data in their medical record suggesting that they identified as TGD.

These findings have several implications for clinical practice and future research. First, the association between ASD and TGD identification shows how critical it is for all pediatric clinicians—across primary care, subspecialty, and hospital settings—to be prepared to provide developmentally responsive, affirming care. There are important commonalities in the clinical care of autism and gender diversity.^9,10 For both, care is ideal when it is individualized and family-centered. It should be carefully tailored to youths’ strengths, as well as their treatment goals and preferences, which can sometimes be at odds with those of their parents. Care for autism and gender diversity usually benefits from strong interdisciplinary collaboration among primary care clinicians, pediatric specialists, mental health specialists, and other clinicians to optimize youths’ physical and psychological health. Additionally, youth are more likely to thrive in safe and trusted health care environments. For youth with ASD, for example, staff may work to minimize sensory triggers and distractions¹⁰; for youth who identify as TGD, staff should use patients’ chosen names and pronouns.^9,11

Clinicians should be prepared to provide affirming care to youth with ASD or who identify as TGD and will be better positioned to support youth who may need care relating to both. When youth with ASD identify as TGD, clinicians should view this identity as authentic.¹² They should also understand that youth with ASD deserve access to evidence-based, high-quality, gender-affirming care, and that an ASD diagnosis should not prevent youth and families from providing informed consent to gender-affirming care.¹³

Second, the findings of Kahn et al are a reminder that pediatric clinicians must serve as advocates to combat stigma. Youth who have ASD and youth who are TGD commonly experience discrimination and social rejection related to their identities, as do their families.^14,15 When autism and gender diversity intersect, stigma is likely to be even further amplified. Stigma in health care settings may prevent youth and families from presenting for needed care,^15,16 and in the broader community, may worsen youths’ social and emotional well-being.^15,17 Clinicians can reduce stigma by listening to the perspectives of youth with ASD and who identify as TGD, educating themselves and their staff on autism, gender diversity, and facets of care for both using respectful, nonstigmatizing language when talking to and about youth, raising awareness and educating the public about autism and gender diversity, and challenging negative stereotypes.^18,19

Third, the authors’ findings should spur further research on potential underlying mechanisms, which may help optimize care for youth who have ASD and identify as TGD. It is possible that youth with ASD, who may be more accustomed to functioning outside societal norms, are less likely to adhere to rigid expectations about gender conformity.⁷ Alternatively, as the findings of Kahn et al highlight, the association between ASD and TGD identification may be explained by differences in access to care; for example, youth receiving care for ASD may be more likely than neurotypical youth to have frequent interactions with clinicians, allowing them more opportunities to build trust and share their gender identity.

Importantly, Kahn et al also found that, among individuals with ASD, youth of color and those with publicly funded health insurance were least likely to receive a diagnosis suggesting that they identified as TGD. Since the percentage of youth who identify as TGD is comparable across racial and ethnic groups (ie, 1% to 2%),² future studies should carefully determine whether disparities in receipt of gender-affirming care exist by race, ethnicity, and insurance status among youth with ASD. In some states, legislated bans on the use of state Medicaid funds to pay for gender-affirming care will almost certainly worsen health disparities, particularly since Medicaid is the primary insurer of youth of color in the United States.^20,21

Amid the recent, dramatic rise in antitransgender policies across the United States, we assert that the study by Kahn et al must not be used to further stigmatize or discriminate against TGD youth, or to pathologize identifying as TGD because of its links with a neurodevelopmental condition. Furthermore, these findings must not be used to delegitimize the identities of TGD youth or restrict TGD youths' access to gender-affirming care, including TGD youth who also have ASD.²² Instead, the authors’ findings should encourage pediatric clinicians to assume a central role in optimizing the health and well-being of youth who have ASD and/or identify as TGD, who are likely to thrive when they have the strong support of caring, affirming health care providers.

Glossary

ASD

autism spectrum disorder

TGD

transgender and gender diverse