Autism spectrum disorders

According to the CDC, the prevalence of autism spectrum disorders (ASD) has gone from roughly 1 in 68 children in 2010 to 1 in 36 children in 2020.¹ This is nearly a 50% increase over that 10-year period. Over the last several years, there has been evidence suggesting that increasing numbers of young people with ASD or other neurodivergent conditions identify as transgender or gender diverse.² Experts agree more careful attention must be paid to these patients.

^{UT Southwestern Medical Center}

Dr. M. Brett Cooper

Clinical work with neurodivergent youth, especially those with ASD, can be complicated. This includes things such as difficulty with communication, possible concrete thinking, and obsessive interests. While earlier research has shown a higher incidence of ASD in those referred to specialized gender medical clinics, it is important to realize that not all of these youth are seeking medical care. They may be brought to the attention of a primary care pediatrician (PCP) if the child has discussed their gender identity at home. It is important that PCPs approach these young people with an open mind and address any coexisting mental health conditions. PCPs must be careful not to dismiss any gender identity concerns as another of the patient’s “obsessions”; rather, they should ensure the patient receives the appropriate mental health care that they need to explore these concerns. One challenge for PCPs is that there is a dearth of mental health professionals who have experience in working with young people who have both gender dysphoria and a neurodivergent condition.

For those clinicians who provide gender-affirming medical care to these young people, it is imperative that they have a thorough understanding of the patient’s gender identity and medical goals before starting any treatment. This may require extensive collaboration with the patient’s mental health provider. The clinician providing medical care may also choose to proceed slower with the introduction of hormones and their subsequent dosing to allow the young person time to continue discussing their effects with their mental health provider. To help clinicians, Dr. John Strang and a multidisciplinary group of collaborators developed a set of guidelines for co-occurring ASD and gender dysphoria in adolescents.³ More recently, Dr. Strang and other collaborators have also developed a questionnaire that can be used by clinicians in the care of these patients.⁴ The goal of this questionnaire is to allow the young people to “communicate their experiences and needs in a report format attuned to common autistic thinking and communication styles.”

In summary, pediatricians and those who care for children and adolescents need to be aware of the increased association between those with ASD or other neurodivergent conditions and gender dysphoria. To ensure that these young people receive optimal care, it is important to connect them to experts (if possible) in coexisting ASD and gender dysphoria. If such experts are not readily available, the National LGBTQIA+ Health Education Center has developed a resource for providing an affirmative approach to care for these young people.⁵ While more research is needed to better understand young people with coexisting ASD (or other neurodivergent conditions), taking an individualized approach to their care can help ensure optimal outcomes.

Dr. Cooper is assistant professor of pediatrics at University of Texas Southwestern, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas.

References

1. Data & Statistics on Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/data.html.

2. Glidden D et al. Gender dysphoria and autism spectrum disorder: A systematic review of the literature. Sex Med Rev. 2016;4(1):3-14. doi:10.1016/j.sxmr.2015.10.003.

3. Strang JF et al. Initial clinical guidelines for co-occurring autism spectrum disorder and gender dysphoria or incongruence in adolescents. J Clin Child Adolesc Psychol. 2018;47(1):105-15. doi:10.1080/15374416.2016.1228462.

4. Strang JF et. al. The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults. Autism Adulthood. 2023 Jun 1;5(2):175-90. doi: 10.1089/aut.2023.0002.

5. National LGBT Health Education Center. Neurodiversity & gender-diverse youth: An affirming approach to care 2020. https://www.lgbtqiahealtheducation.org/publication/neurodiversity-gender-diverse-youth-an-affirming-approach-to-care-2020/download