Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents.
Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents.
J Clin Child Adolesc Psychol. 2016 Oct 24;:1-11
Authors: Strang JF, Meagher H, Kenworthy L, de Vries ALC, Menvielle E, Leibowitz S, Janssen A, Cohen-Kettenis P, Shumer DE, Edwards-Leeper L, Pleak RR, Spack N, Karasic DH, Schreier H, Balleur A, Tishelman A, Ehrensaft D, Rodnan L, Kuschner ES, Mandel F, Caretto A, Lewis HC, Anthony LG
Evidence indicates an overrepresentation of youth with co-occurring autism spectrum disorders (ASD) and gender dysphoria (GD). The clinical assessment and treatment of adolescents with this co-occurrence is often complex, related to the developmental aspects of ASD. There are no guidelines for clinical care when ASD and GD co-occur; however, there are clinicians and researchers experienced in this co-occurrence. This study develops initial clinical consensus guidelines for the assessment and care of adolescents with co-occurring ASD and GD, from the best clinical practices of current experts in the field. Expert participants were identified through a comprehensive international search process and invited to participate in a two-stage Delphi procedure to form clinical consensus statements. The Delphi Method is a well-studied research methodology for obtaining consensus among experts to define appropriate clinical care. Of 30 potential experts identified, 22 met criteria as expert in co-occurring ASD and GD youth and participated. Textual data divided into the following data nodes: guidelines for assessment; guidelines for treatment; six primary clinical/psychosocial challenges: social functioning, medical treatments and medical safety, risk of victimization/safety, school, and transition to adulthood issues (i.e., employment and romantic relationships). With a cutoff of 75% consensus for inclusion, identified experts produced a set of initial guidelines for clinical care. Primary themes include the importance of assessment for GD in ASD, and vice versa, as well as an extended diagnostic period, often with overlap/blurring of treatment and assessment.
Gender dysphoria (GD; formerly described as gender identity disorder; American Psychiatric Association, 2000 American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, text revision (4th ed.). Arlington, VA: Author. Retrieved from
[Crossref], [Google Scholar]), currently referred to as transsexualism in the International Statistical Classification of Disease and Related Health Problems, 10th Revision (ICD-10; World Health Organization, 2010 World Health Organization. (2010). International statistical classification of diseases and related health problems, 10th revision. Geneva, Switzerland: Author. [Google Scholar]) and likely to be referred to as gender incongruence in ICD-11 (ICD-11 Beta Draft; World Health Organization, 2014 World Health Organization. (2014). International statistical classification of diseases and related health problems, 11th revision beta draft. Geneva, Switzerland: Author. [Google Scholar]), is the condition of incongruence, with or without distress, related to a discrepancy between an individual’s assigned gender at birth and their experienced gender (American Psychiatric Association, 2013 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.[Crossref], [Google Scholar]). Gender nonconformity (GNC; also known as “gender variance”) is a broader term that encompasses GD and describes the situation in which an individual’s gender identity or expression shows variation from the cultural norms prescribed for a particular sex. Standards of clinical care for GNC and GD youth include those outlined in the World Professional Association for Transgender Health “Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People” document (Coleman et al., 2012 Coleman, E., Bockting, W., Botzer, M., Cohen-Kettenis, P., DeCuypere, G., Feldman, J., … Zucker, K. (2012). Standards of care for the health of transsexual, transgender, and gender-nonconforming people, Version 7. International Journal of Transgenderism, 13(4), 165–232. doi:10.1080/15532739.2011.700873[Taylor & Francis Online], [Google Scholar]) and the practice parameter on gay, lesbian, or bisexual sexual orientation, gender nonconformity, and gender discordance in children and adolescents (Adelson & American Academy of Child and Adolescent Psychiatry Committee on Quality Issues, 2012 Adelson, S. L., & American Academy of Child and Adolescent Psychiatry Committee on Quality Issues. (2012). Practice parameter on gay, lesbian, or bisexual sexual orientation, gender nonconformity, and gender discordance in children and adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 957–974.[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). These guidelines include providing psychoeducational and social support for GNC young people and their parents and careful psychological evaluation for GD. For those youth (as young as early puberty) who meet criteria for GD, who are determined to be appropriate for physical interventions to promote healthy psychological adjustment, the following treatments are available: puberty suppression beginning in early puberty, cross-sex hormones in later adolescence, and gender-affirming surgical procedures (many different types of procedures, some of which are also referred to as sex reassignment surgery; generally available when a young person reaches the legal age of majority to give consent).
Several studies have suggested that autism spectrum disorder (ASD) and GNC/GD co-occur more often than by chance in adolescents (de Vries, Noens, Cohen-Kettenis, van Berckelaer-Onnes, & Doreleijers, 2010 de Vries, A. L. C., Noens, I. L. J., Cohen-Kettenis, P. T., van Berckelaer-Onnes, I. A., & Doreleijers, T. A. (2010). Autism spectrum disorders in gender dysphoric children and adolescents. Journal of Autism and Developmental Disorders, 40(8), 930–936. doi:10.1007/s10803-010-0935-9[Crossref], [PubMed], [Web of Science ®], [Google Scholar]), and this co-occurrence presents significant clinical challenges (Menvielle, 2012 Menvielle, E. (2012). A comprehensive program for children with gender variant behaviors and gender identity disorders. Journal of Homosexuality, 59(3), 357–368. doi:10.1080/00918369.2012.653305[Taylor & Francis Online], [Web of Science ®], [Google Scholar]). 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Journal of Autism and Developmental Disorders, 40(8), 930–936. doi:10.1007/s10803-010-0935-9[Crossref], [PubMed], [Web of Science ®], [Google Scholar]; Shumer, Tishelman, Reisner, & Edwards-Leeper, 2015 Shumer, D. E., Tishelman, A. C., Reisner, S. L., & Edwards-Leeper, L. (2015). Evaluation of autism spectrum disorder in youth presenting to a gender dysphoria clinic. Paper presented at the Annual Meeting of Pediatric Academic Societies, San Diego, CA, April, 2015. [Google Scholar]; Skagerberg, Di Ceglie, & Carmichael, 2015 Skagerberg, E., Di Ceglie, D., & Carmichael, P. (2015). Brief report: Autistic features in children and adolescents with gender dysphoria. Journal of Autism and Developmental Disorders, 45(8), 2628–2632. doi:10.1007/s10803-015-2413-x[Crossref], [PubMed], [Web of Science ®], [Google Scholar]; VanderLaan, Leef, Wood, Hughes, & Zucker, 2015 VanderLaan, D. P., Leef, J. H., Wood, H., Hughes, S. K., & Zucker, K. J. (2015). Autism spectrum disorder risk factors and autistic traits in gender dysphoric children. Journal of Autism and Developmental Disorders, 45(6), 1742–1750. doi:10.1007/s10803-014-2331-3[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). Three studies have found an overrepresentation of the “wish to be the other gender” among children and adolescents with ASD (Janssen, Huang, & Duncan, 2016 Janssen, A., Huang, H., & Duncan, C. (2016). Gender variance among youth with autism spectrum disorders: A retrospective chart review. Transgender Health, 1(1), 63–68. doi:10.1089/trgh.2015.0007[Crossref], [Google Scholar]; Miesen, Hurley, Bal, & de Vries, 2015 Miesen, A., Hurley, H., Bal, A., & de Vries, A. L. (2015). Gender variance in children and adults with ASD. Paper presented at the Biennial Conference of the European Association of Transgender Health, Ghent, Belgium, March, 2015. [Google Scholar]; Strang et al., 2014 Strang, J. F., Kenworthy, L., Dominska, A., Sokoloff, J., Kenealy, L. E., Berl, M., … Wallace, G. L. (2014). Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Archives of Sexual Behavior, 43(8), 1525–1533. doi:10.1007/s10508-014-0285-3[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). Shumer and colleagues examined relationships between Social Responsiveness Scale (SRS) scores (used as a proxy for ASD symptoms) and GNC, finding that elevations on child SRS scores (as rated by the parent) and maternal SRS scores (as rated by the other parent or a close relative) independently predicted greater GNC in the child (Shumer, Roberts, Reisner, Lyall, & Austin, 2015 Shumer, D. E., Roberts, A. L., Reisner, S. L., Lyall, K., & Austin, S. B. (2015). Brief report: Autistic traits in mothers and children associated with child’s gender nonconformity. Journal of Autism and Developmental Disorders, 45(5), 1489–1494. doi:10.1007/s10803-014-2292-6[Crossref], [PubMed], [Web of Science ®], [Google Scholar]).
ASD is often a debilitating disorder, with studies reporting generally poor long-term (adult) outcomes in terms of independence and meaningful employment (Howlin, Goode, Hutton, & Rutter, 2004 Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 45(2), 212–229. doi:10.1111/jcpp.2004.45.issue-2[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). Even for individuals with average or above intelligence, estimates indicate that only 9% reach full adult functional independence (Farley et al., 2009 Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., … Coon, H. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research: Official Journal of the International Society for Autism Research, 2(2), 109–118. doi:10.1002/aur.69[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). Deficits in social skills and communication, and the presence of repetitive behaviors/overfocused interests characterize the diagnosis. Children and adolescents with ASD often show profoundly underdeveloped adaptive/independence skills, which are related to problems with executive function skills (Gilotty, Kenworthy, Sirian, Black, & Wagner, 2002 Gilotty, L., Kenworthy, L., Sirian, L., Black, D. O., & Wagner, A. E. (2002). Adaptive skills and executive function in autism spectrum disorders. Child Neuropsychology: A Journal on Normal and Abnormal Development in Childhood and Adolescence, 8(4), 241–248. doi:10.1076/chin.22.214.171.12404[Taylor & Francis Online], [Web of Science ®], [Google Scholar]; Pugliese et al., 2015 Pugliese, C. E., Anthony, L., Strang, J. F., Dudley, K., Wallace, G. L., & Kenworthy, L. (2015). Increasing adaptive behavior skill deficits from childhood to adolescence in autism spectrum disorder: Role of executive function. Journal of Autism and Developmental Disorders, 45(6), 1579–1587. doi:10.1007/s10803-014-2309-1[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). Typical ASD executive function profiles include problems with cognitive and behavioral flexibility, as well as with organization and planning (e.g., setting and completing goals; Kenworthy, Yerys, Anthony, & Wallace, 2008 Kenworthy, L., Yerys, B. E., Anthony, L. G., & Wallace, G. L. (2008). Understanding executive control in autism spectrum disorders in the lab and in the real world. Neuropsychology Review, 18(4), 320–338. doi:10.1007/s11065-008-9077-7[Crossref], [PubMed], [Web of Science ®], [Google Scholar]).
The co-occurrence of ASD and GNC/GD in adolescents presents significant diagnostic and treatment challenges given the social, adaptive, self-awareness, communication, and executive function complexities of youth with ASD. However, many adolescents with this co-occurrence are found clinically appropriate for GD-related treatment (de Vries et al., 2010 de Vries, A. L. C., Noens, I. L. J., Cohen-Kettenis, P. T., van Berckelaer-Onnes, I. A., & Doreleijers, T. A. (2010). Autism spectrum disorders in gender dysphoric children and adolescents. Journal of Autism and Developmental Disorders, 40(8), 930–936. doi:10.1007/s10803-010-0935-9[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). A primary challenge is how to clinically assess and support them (Kraemer et al., 2005 Kraemer, B., Delsignore, A., Gundelfinger, R., Schnyder, U., & Hepp, U. (2005). Comorbidity of Asperger syndrome and gender identity disorder. European Child & Adolescent Psychiatry, 14(5), 292–296. doi:10.1007/s00787-005-0469-4[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). Individual clinics have through experience developed rich clinical knowledge for supporting adolescents with the co-occurrence; however, there are currently no guidelines published. In response to this need, this current study aimed to develop initial clinical guidelines for the care of adolescents with co-occurring ASD and GNC/GD through use of the Delphi procedure, which allows collaborative participation of experts in the field. These guidelines address the clinical care of adolescents (defined as the time of onset of puberty through age 19) but do not address the clinical care of prepubertal children, as prepubertal children do not receive gender-related medical interventions and therefore their care needs are somewhat different. Further, many youth with ASD first present with gender issues in adolescence, with no significant signs of either gender exploration or gender dysphoria in young childhood. We strongly endorse future workgroups developing specific clinical recommendations addressing the needs of prepubertal children with co-occurring ASD and GNC/GD.
To obtain clinical consensus statements, as well as to identify areas in which current experts differ, this study employed a two-stage Delphi procedure. The Delphi procedure is a well-studied multistep survey method for obtaining consensus among experts to define appropriate clinical care (Keeney, McKenna, & Hasson, 2011 Keeney, S., McKenna, H., & Hasson, F. (2011). The Delphi technique in nursing and health research. West Sussex, UK: Wiley-Blackwell.[Crossref], [Google Scholar]; Linstone & Turoff, 1975 Linstone, H. A., & Turoff, M. (1975). The Delphi method: Techniques and applications. Boston, MA: Addison-Wesley. [Google Scholar]), such as with self-injury (Kelly, Jorm, Kitchener, & Langlands, 2008 Kelly, C. M., Jorm, A. F., Kitchener, B. A., & Langlands, R. L. (2008). Development of mental health first aid guidelines for deliberate non-suicidal self-injury: A Delphi study. BMC Psychiatry, 8, 62. doi:10.1186/1471-244X-8-62[Crossref], [PubMed], [Web of Science ®], [Google Scholar]), postdisaster care (Bisson et al., 2010 Bisson, J. I., Tavakoly, B., Witteveen, A. B., Ajdukovic, D., Jehel, L., Johansen, V. J., … Olff, M. (2010). TENTS guidelines: Development of post-disaster psychosocial care guidelines through a Delphi process. The British Journal of Psychiatry: The Journal of Mental Science, 196(1), 69–74. doi:10.1192/bjp.bp.109.066266[Crossref], [PubMed], [Web of Science ®], [Google Scholar]), palliative care (Morita, Bito, Kurihara, & Uchitomi, 2005 Morita, T., Bito, S., Kurihara, Y., & Uchitomi, Y. (2005). Development of a clinical guideline for palliative sedation therapy using the Delphi method. Journal of Palliative Medicine, 8(4), 716–729. doi:10.1089/jpm.2005.8.716[Crossref], [PubMed], [Google Scholar]), stroke care (Philp et al., 2013 Philp, I., Brainin, M., Walker, M. F., Ward, A. B., Gillard, P., Shields, A. L., … Global Stroke Community Advisory Panel. (2013). Development of a poststroke checklist to standardize follow-up care for stroke survivors. Journal of Stroke and Cerebrovascular Diseases: The Official Journal of National Stroke Association, 22(7), e173–180.[Crossref], [PubMed], [Web of Science ®], [Google Scholar]), and so forth. The method presents structured pertinent questions in a field to experts, who then anonymously offer responses. The data are combined and returned to the expert participants, with no names tied to statements, and each expert indicates his or her level of agreement with each item. The method helps circumvent the problems of a group process including rigidity in defending proposed ideas, conforming to more senior members, and rejection of novel ideas. Various formats have been used for the Delphi method, including in-person work sessions and online survey formats (Hsu & Sandford, 2007 Hsu, C. C., & Sandford, B. A. (2007). The Delphi technique: Making sense of consensus. Practical Assessment, Research, and Evaluation, 12(10), 1–8. [Google Scholar]). For this study, we employed an online survey method, which allowed for experts to participate from geographically distant regions (Keeney et al., 2011 Keeney, S., McKenna, H., & Hasson, F. (2011). The Delphi technique in nursing and health research. West Sussex, UK: Wiley-Blackwell.[Crossref], [Google Scholar]; Linstone & Turoff, 1975 Linstone, H. A., & Turoff, M. (1975). The Delphi method: Techniques and applications. Boston, MA: Addison-Wesley. [Google Scholar]). The Delphi procedure is a robust method for fields in which there are a small number of experts (Akins, Tolson, & Cole, 2005 Akins, R. B., Tolson, H., & Cole, B. R. (2005). Stability of response characteristics of a Delphi panel: Application of bootstrap data expansion. BMC Medical Research Methodology, 5, 37. doi:10.1186/1471-2288-5-37[Crossref], [PubMed], [Google Scholar]), such as with adolescents with co-occurring ASD and GNC/GD.
Participant recruitment followed Delphi method standards for recruiting experts in a field (Keeney et al., 2011 Keeney, S., McKenna, H., & Hasson, F. (2011). The Delphi technique in nursing and health research. West Sussex, UK: Wiley-Blackwell.[Crossref], [Google Scholar]; Linstone & Turoff, 1975 Linstone, H. A., & Turoff, M. (1975). The Delphi method: Techniques and applications. Boston, MA: Addison-Wesley. [Google Scholar]). Potential participants were identified first through a comprehensive search of the research literature using the terms “autism spectrum disorder,” “autism,” or “Asperger’s” combined with the following: “gender identity,” “gender variance,” “gender nonconformity,” “transgender,” or “gender dysphoria.” Authors were identified from the resulting research literature. In addition, a comprehensive search of pediatric outpatient gender clinics was conducted, including the names of the directors and clinical staff experienced in co-occurring GNC/GD and ASD in adolescents. We then used a snowball sampling technique to allow this group of experts to identify other potential experts who were missed in our initial search (Biernacki & Waldorf, 1981 Biernacki, P., & Waldorf, D. (1981). Snowball sampling: Porblems and techniques of chain referral sampling. Sociological Methods & Research, 10(2), 141–163. [Google Scholar]). This was accomplished by asking the participants to forward the invitation e-mail themselves to other researcher or clinician experts in the field of co-occurring ASD and GNC/GD youth. In total, 30 potential participants were invited, and 27 expressed interest in participating.
The 27 potential participants were then screened both for level of training/experience in the fields of ASD and GNC/GD independently and for their experience with adolescents with the co-occurrence. In total, 22 individuals met criteria for the study in terms of expertise and then participated. Expertise, and resulting invitation to complete the Delphi surveys, was defined as at least 2 years of experience working with adolescents with the ASD and GNC/GD co-occurrence clinically and/or in research settings, as well as a clinical and/or research specialization in GNC/GD, ASD, or GNC/GD and ASD. As was expected, a majority of participants were experts in GNC/GD (91%), as the co-occurrence with ASD has been primarily reported on from gender clinics/specialists in past reports. Forty-one percent reported being experts in ASD, and 36% reported being experts in both GNC/GD and ASD independently. Although not all were experts in ASD, 68% reported specialization in the co-occurrence of GNC/GD and ASD. The participants represented a broad range of specialties: clinical psychology (45.5%), psychiatry (31.8%), endocrinology (9.1%), pediatrics (4.5%), social work (4.5%), and counseling (4.5%). A majority of participants reported participation in peer-reviewed academic research, with 32% published in the field of ASD, 77% in GNC/GD, and 32% in co-occurring GNC/GD and ASD. Twenty-one of the 22 participants were child/adolescent specialists, and one participant was an adult specialist with significant experience working with children/adolescents. Three of the participants reside and work in Europe (the Netherlands), and the others work in the United States. A majority of participants were affiliated with academic medical center clinical and/or research programs at the time of this study (20 of the 22 participants). See Table 1 for a summary of participant training, specialization, and experience.
Table 1 of 1
TABLE 1 Participant Experience With GD and ASD
Note: Data were missing for one participant’s self-assessment of expertise with ASD and in the reported number of individuals one participant had seen clinically. GD = gender dysphoria; ASD = autism spectrum disorders; Years Experience = years experience working with this population; Expert with Population = participant has a primary clinical specialty and advanced training with this population; Published in Population = participant has published at least one peer-reviewed article in an area related to this population.
Informed consent was obtained from all individual participants included in the study. For the first round of the Delphi interviews, participants were asked to complete online surveys, responding to 12 areas of clinical care. Questions focused on diagnosis/evaluation, treatment, and significant issues that affect people with the co-occurrence. Nineteen participants completed this first round. The data were compiled and coded using NVivo qualitative data analysis computer software (NVivo 10, 2012 NVivo 10 [Computer software]. (2012). Doncaster, Australia: QSR International. [Google Scholar]). The data were first divided between the main categories of diagnostics and intervention, with considerable overlap between the two. Because terminology in the data was extremely diverse for clinical and gender issues, the NVivo search mechanism would have resulted in a significant loss of data. Therefore we used the manual coding functions of NVivo, which resulted in the following principle thematic areas: approach to assessment, differential diagnosis, and treatment. Subcategories within these thematic areas included diagnosing GD in youth diagnosed with ASD, diagnosing ASD in youth with GD, assessment protocols, appropriate clinical specialists/team, challenges working with other providers, parent/family involvement, protocols for treatment, treatment targets, treatment approaches, issues of safety, and coping/socialization.
Next, two readers worked to synthesize the data into summary statements, working independently and then together to achieve consensus for how best to express the ideas clearly and concisely while maintaining the integrity of the participants’ intents. This process included removing repetitious data, as well as generating a structure for organizing the statements. The resulting statements were presented to the participants for their review (Round 2 of the Delphi procedure), without any indication linking authors/names to statements. Participants were asked whether they agreed or disagreed with each statement, and if they disagreed, what changes would need to be effected in the statement for them to agree. Twenty people participated in the second round: 17 of the original 19 participants and three participants who chose not to participate in the first round of the Delphi procedure. The “new” participants were allowed to respond to the second questionnaire even though they did not give any input into the original questionnaire, because their input provided more perspectives, which is critical in a field in which there are few experts. This inclusive method has been used in previous studies using the Delphi procedure (Keeney et al., 2011 Keeney, S., McKenna, H., & Hasson, F. (2011). The Delphi technique in nursing and health research. West Sussex, UK: Wiley-Blackwell.[Crossref], [Google Scholar]).
Statements were evaluated for consensus, with 75% consensus required for a statement to be included in the expert guidelines (see Results section). If participant recommendations for editing a statement could be made without changing the essence of the statement, these slight edits were made. These edits were often clarifications, or more inclusive language to describe variations in gender. Finally, all expert participants were invited to identify themselves and serve as coauthors of this resulting article. A majority of the participants (> 90%) consented to identify themselves as coauthors. Additional informed consent was obtained from all identified participants. This group then participated in the editing of the resulting article, with the exception of the Results section, which was produced through the Delphi procedure and is presented in its original form based on that process. The first three authors were primary architects of the study, and the final author made significant contributions to the statistical methods. All of the other authors were from the expert participant panel, listed as Authors 4–22. The author order, excluding the first three authors and the last author, was determined by a random procedure.
The following is the document that was developed through the Delphi procedure, with an average of 89.6% agreement for all items. These guidelines were created to accompany and support existing best practice GD/GNC treatment guidelines for adolescents (e.g., Adelson & American Academy of Child and Adolescent Psychiatry Committee on Quality Issues, 2012 Adelson, S. L., & American Academy of Child and Adolescent Psychiatry Committee on Quality Issues. (2012). Practice parameter on gay, lesbian, or bisexual sexual orientation, gender nonconformity, and gender discordance in children and adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 957–974.[Crossref], [PubMed], [Web of Science ®], [Google Scholar]; Coleman et al., 2012 Coleman, E., Bockting, W., Botzer, M., Cohen-Kettenis, P., DeCuypere, G., Feldman, J., … Zucker, K. (2012). Standards of care for the health of transsexual, transgender, and gender-nonconforming people, Version 7. International Journal of Transgenderism, 13(4), 165–232. doi:10.1080/15532739.2011.700873[Taylor & Francis Online], [Google Scholar]). Minor clarifications to the guidelines were made following masked review, all of which were considered and approved by the author team. Contentious items that need further consideration and research are reviewed in the discussion.
When assessing for co-occurring ASD and GD, gender specialists and autism specialists should collaborate to be part of the assessment when there is no available clinician skilled in both specialties. Due to the complexity of diagnosis in many of these cases, there may be a more extended diagnostic period and clinical decisions may proceed more slowly. Given the high incidence of ASD among adolescents with GNC/GD, gender referrals should be screened for ASD. If ASD is suspected and the screening clinician is not an ASD specialist, the patient should be referred to an ASD specialist for ASD diagnostics. ASD-related evaluation can provide important information about the capacities of the adolescent, including cognitive level, executive function/future thinking-skills, communication abilities, social awareness, and self-awareness. Understanding this profile of skills will help inform the clinical approaches to best match the patient’s profile/strengths. Given the increased incidence of gender issues among people diagnosed with ASD, youth with ASD should also be screened for gender issues. Screening may be accomplished by including a few questions about gender identity on an intake form and/or by including some content about gender issues in the clinical interview. If gender concerns are noted, a referral should be made to an appropriate gender specialist for assessment and supports. See Figure 1 for a clinical assessment protocol.
The diagnosis of ASD should not exclude an adolescent from also receiving a GD diagnosis and, when indicated, appropriate GD-related treatment. However, clinicians and parents sometimes dismiss GD as a trait of ASD (e.g., as an overfocused or unusual interest). Although in some cases GD symptoms appear to stem from ASD symptoms, many adolescents have persistent GD independent of their ASD. Similarly, an undiagnosed ASD can be missed if a clinician and/or parents view an adolescent’s social difficulties as stemming from GD-related challenges alone. Parents and/or clinicians may resist further assessments after receiving one diagnosis, whether it be ASD or GD, if they view all symptoms through the lens of the initial diagnosis.
Diagnosing ASD can be complex in gender nonconforming youth. A young person might appear socially awkward or withdrawn related to their history of GNC, such as when there has been insufficient opportunity to develop a sense of social belonging and acceptance. Diagnosing GD can be complex in adolescents with ASD due to ASD-related weaknesses in communication, self-awareness, and executive function. For example, ASD communication deficits can result in unclear, tangential communication, which can make it difficult to know how an adolescent truly feels about their gender. ASD-related executive function deficits may result in concrete thinking and struggle with ambiguity and future thinking, which can make assessing an adolescent’s understanding of the long-term implications of gender transition/treatment challenging. In addition, ASD-related flexibility difficulties can limit a young person’s ability to embrace the concept of a gender spectrum or that gender can be fluid; adolescents with ASD may present with more “black-and-white” thinking about gender.
Adolescents with ASD may have limited self-awareness and may struggle to recognize or understand their gender concerns until later in development. There are some young people with ASD who do not embody a binary transgender presentation (e.g., they may not work to present as a different gender, they may not dress as a different gender, they may not be concerned with their name, etc.) These variations from more common GD presentations may raise issues of credibility for parents, medical/psychological professionals, and so on. However, many such youth appear to have persistent gender signs, feelings, or experiences of another gender and should not be excluded from consideration of GD diagnosis and appropriate related treatments, tailored to their individual needs.
ASD-related symptoms can sometimes create or intensify an identification with GD. Rigid, overly concrete thinking (i.e., black-and-white thinking) in adolescents with ASD and milder gender concerns may lead some children/adolescents to assume that their gender nonconforming interests/traits imply full GD and a need for transition. These young people may struggle to see or consider an “in-between” solution, such as being a feminine male or “gender queer.” Gay or bisexual adolescents with ASD may concretely assume that their sexual attraction to the same gender means that they must be a different gender. Important to note, although some adolescents express gender concerns clearly related to (or due to) their ASD symptoms as just described, based on our long-term clinical experience with this population, we have observed that many have enduring GD and are over time found appropriate for GD supports/treatment (see also de Vries et al., 2010 de Vries, A. L. C., Noens, I. L. J., Cohen-Kettenis, P. T., van Berckelaer-Onnes, I. A., & Doreleijers, T. A. (2010). Autism spectrum disorders in gender dysphoric children and adolescents. Journal of Autism and Developmental Disorders, 40(8), 930–936. doi:10.1007/s10803-010-0935-9[Crossref], [PubMed], [Web of Science ®], [Google Scholar]).
Assessment and treatment of gender-related issues in adolescents with the co-occurrence often overlap and blur because insight, flexible thinking, communication, and other skills develop over time in ASD treatment. Assessment may continue over time as the young person, through treatment, develops increased capacity for thinking and communicating about their gender. Treatments often must address both diagnoses (GD and ASD) concurrently and evaluate the gender-related needs as therapy progresses and patients have a better understanding of their needs and challenges, the possible solutions that might meet their needs, and their consequences. See Figure 2 for a treatment checklist. Adolescents and their parents often require psychoeducation about the nature of the co-occurrence of ASD and GNC/GD (e.g., that this is a common co-occurrence, that there are a range of options/outcomes), with a focus on how GD presentation may be different in individuals with ASD than those without ASD (e.g., differences in presentation and age of onset) and how the assessment/treatment process will unfold. To the extent possible, the assessment/intervention sequence should be outlined in a straightforward and visual manner for the adolescent with ASD (e.g., a checklist or flowchart), using clear language to reduce overload and increase participation in treatment. To reduce the conceptual complexity and vagueness of gender-related concepts, the concepts should be presented as simply and concretely as possible.
FIGURE 2 Treatment checklist (psychosocial and medical).
Some adolescents with the co-occurrence struggle with treatment compliance. They may not see the purpose, or may not have sufficient organizational skills to attend regular appointments (e.g., psychotherapy or medical) without supports. Given the importance of ongoing monitoring and counseling, it is critical to develop a plan to maximize a patient’s motivation and ability to participate consistently in the treatment process. Parent/caregiver involvement is often necessary to support treatment compliance, help move the therapy goals along, and help clarify key information such as intensity of symptoms/gender dysphoria, gender expression/behaviors outside of treatment, and so on. An adolescent with ASD may not know how to present as a different gender, such as choosing/obtaining appropriate clothing. Parent/caregiver involvement may be necessary to guide the gender exploration process. Young people with ASD who are transitioning may require family organizational supports for transition to manage hormone treatments, medical appointments, remembering aspects of dress/presentation, and so forth.
Adolescents who are clearly in an exploratory phase of gender (e.g., with unclear or inconsistent signs of GD) should be encouraged to explore their gender identity over time before being considered for any potentially irreversible gender-related medical treatments. Clinical work may help adolescents explore whether they might be more comfortable with their body than they originally assert and/or whether they might feel comfortable identifying somewhere outside of the gender binary (i.e., “gender spectrum”). A focus on comorbid symptoms may be helpful during this phase, such as treatments targeting executive function (e.g., flexibility/big picture thinking), communication, social cognition, and so on. By providing concrete psychoeducation about how gender for some people can be fluid, not just binary and physical, and concurrent intervention targeting flexible thinking and self-awareness, some individuals with less urgent gender presentations may realize that full gender transition does not fit them. These young people may become more comfortable with a less binary solution, such as maintaining a female body while expressing some male-typical interests/behaviors.
For those adolescents who ultimately engage in some level of transition or cross-gender presentation/identification, intervention may be required to help them navigate the inherent complexities of GNC/GD and transition. Specific challenges often arise in the areas discussed next.
For some young people with this co-occurrence, it may be difficult/anxiety provoking to express their gender publicly, such as at school or at work. Others are surprisingly resilient and unconcerned (or perhaps unaware) with how others experience them, related to their apparent disconnect from social expectations/bias. Our experience is that the co-occurrence can often lead to increased social isolation, as both ASD and GD can in themselves be isolating, and together the impact is exacerbated. These individuals may struggle to fit in with ASD treatment/social groups due to their GD, and teen gender support groups may struggle to welcome them due to their ASD-related social differences, which may be off-putting to non-ASD peers. Sometimes the primary social contact that these adolescents have is through Internet-based transgender-related blogs/groups, and this may be where they are first introduced to the concept of GD/transgenderism.
An ASD diagnosis should not exclude the potential for medical GD treatments, including puberty suppression and cross-sex hormone intervention. Of these treatments, puberty suppression is considered to have generally reversible effects if discontinued, though further research is required (Schagen, Cohen-Kettenis, Delemarre-van de Waal, & Hannema, 2016 Schagen, S. E. E., Cohen-Kettenis, P. T., Delemarre-van de Waal, H. A., & Hannema, S. E. (2016). Efficacy and safety of gonadotropin-releasing hormone agonist treatment to suppress puberty in gender dysphoric adolescents. The Journal of Sexual Medicine, 13(7), 1125–1132. doi:10.1016/j.jsxm.2016.05.004[Crossref], [PubMed], [Google Scholar]). Cross-sex hormones may have more permanent effects, even if discontinued (Seal, 2016 Seal, L. J. (2016). A review of the physical and metabolic effects of cross-sex hormonal therapy in the treatment of gender dysphoria. Annals of Clinical Biochemistry, 53(1), 10–20. doi:10.1177/0004563215587763[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). More caution may need to be taken in this population when deciding on medical treatments that may have irreversible effects given the presence of ASD-related deficits in future thinking and planning. Because it is often harder for an adolescent with ASD to comprehend the long-term risks and implications of gender-related medical interventions, consenting for treatment may be more complex in this population. It is important for the clinician to develop a specialized consenting plan for an adolescent with ASD and GD, with the benefits and risks presented in a concrete manner, appropriate for the young person’s cognitive and communication abilities. If hormone treatment is initiated, it may be helpful in some adolescents to start with lower doses and increase more gradually. Attention should be given to how ASD-related sensory issues and problems with changes in routine may impact medical treatments (e.g., pill taking, injections). The Delphi group could not achieve consensus on exact criteria for commencing medical treatments in this population, but several of the key considerations offered by the Delphi team are reviewed in the Discussion section (paras. 3–4).
Adolescents with ASD and GD may pose a higher risk for medical compliance and medical safety. Young people with this co-occurrence may have difficulty following a specific medical protocol. For example, it may be more challenging for some adolescents with this co-occurrence to remember to take medications, maintain regular medical checkups, and refill prescriptions. Some may struggle with making safe decisions, such as taking the appropriate (prescribed) dose of hormones/medications or obtaining hormones/medications through a doctor, rather than illegally and/or from abroad. Adolescents with this co-occurrence often have unrealistic expectations from treatment and medical interventions, including the belief that hormones alone will result in a perfect/complete transition. Unrealistic thinking about the transformational possibilities of medical interventions may be followed by disappointment/hopelessness, when a young person’s expectations for their body (or others’ perceptions of them) fall short of reality. Medical safety issues may be even more complex when an adolescent with ASD has lower cognitive skills and/or significantly impaired communication skills.
Risk of Victimization/Safety
These youth are at high risk for being bullied and exploited and for being victims of violence. Some struggle with gender transition, making them less likely to “pass” as their affirmed gender, which may increase their risk for victimization. ASD-related deficits can make it difficult for them to consider the safety demands of social and romantic interactions, such as the implications of nondisclosure of transgender status in romantic encounters and meeting/being in potentially unsafe locations. They may be less aware of the relative safety level of different settings/situations (e.g., when in a group of supportive friends in locations that are transgender friendly vs. walking alone at night in an unfamiliar setting). In addition, societal prejudice/victimization, combined with poor coping strategies, detail-oriented and rigid thinking, and social difficulties/isolation may contribute to suicidal ideatio
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