Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents

John F. Strang, Haley Meagher, Lauren Kenworthy, Annelou L.C. de Vries, Edgardo Menvielle, Scott Leibowitz, Aron Janssen, Peggy Cohen-Kettenis, Daniel E. Shumer, Laura Edwards-Leeper, Richard R. Pleak, Norman Spack, Dan H. Karasic, Herbert Schreier, Anouk Balleur, Amy Tishelman, Diane Ehrensaft, Leslie Rodnan, Emily S. Kuschner, Francie Mandel & 3 others Antonia Caretto, Hal C. Lewis, Laura G. Anthony

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)105-115
Number of pages11
JournalJournal of Clinical Child and Adolescent Psychology
Volume47
Issue number1
DOIs
Publication statusPublished - 2 Jan 2018

Cite this

Strang, John F. ; Meagher, Haley ; Kenworthy, Lauren ; de Vries, Annelou L.C. ; Menvielle, Edgardo ; Leibowitz, Scott ; Janssen, Aron ; Cohen-Kettenis, Peggy ; Shumer, Daniel E. ; Edwards-Leeper, Laura ; Pleak, Richard R. ; Spack, Norman ; Karasic, Dan H. ; Schreier, Herbert ; Balleur, Anouk ; Tishelman, Amy ; Ehrensaft, Diane ; Rodnan, Leslie ; Kuschner, Emily S. ; Mandel, Francie ; Caretto, Antonia ; Lewis, Hal C. ; Anthony, Laura G. / Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents. In: Journal of Clinical Child and Adolescent Psychology. 2018 ; Vol. 47, No. 1. pp. 105-115.
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abstract = "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.",
author = "Strang, {John F.} and Haley Meagher and Lauren Kenworthy and {de Vries}, {Annelou L.C.} and Edgardo Menvielle and Scott Leibowitz and Aron Janssen and Peggy Cohen-Kettenis and Shumer, {Daniel E.} and Laura Edwards-Leeper and Pleak, {Richard R.} and Norman Spack and Karasic, {Dan H.} and Herbert Schreier and Anouk Balleur and Amy Tishelman and Diane Ehrensaft and Leslie Rodnan and Kuschner, {Emily S.} and Francie Mandel and Antonia Caretto and Lewis, {Hal C.} and Anthony, {Laura G.}",
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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 2018, 'Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents' Journal of Clinical Child and Adolescent Psychology, vol. 47, no. 1, pp. 105-115. https://doi.org/10.1080/15374416.2016.1228462

Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents. / Strang, John F.; Meagher, Haley; Kenworthy, Lauren; de Vries, Annelou L.C.; Menvielle, Edgardo; Leibowitz, Scott; Janssen, Aron; Cohen-Kettenis, Peggy; Shumer, Daniel E.; Edwards-Leeper, Laura; Pleak, Richard R.; Spack, Norman; Karasic, Dan H.; Schreier, Herbert; Balleur, Anouk; Tishelman, Amy; Ehrensaft, Diane; Rodnan, Leslie; Kuschner, Emily S.; Mandel, Francie; Caretto, Antonia; Lewis, Hal C.; Anthony, Laura G.

In: Journal of Clinical Child and Adolescent Psychology, Vol. 47, No. 1, 02.01.2018, p. 105-115.

Research output: Contribution to journalArticleAcademicpeer-review

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AU - Leibowitz, Scott

AU - Janssen, Aron

AU - Cohen-Kettenis, Peggy

AU - Shumer, Daniel E.

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AU - Pleak, Richard R.

AU - Spack, Norman

AU - Karasic, Dan H.

AU - Schreier, Herbert

AU - Balleur, Anouk

AU - Tishelman, Amy

AU - Ehrensaft, Diane

AU - Rodnan, Leslie

AU - Kuschner, Emily S.

AU - Mandel, Francie

AU - Caretto, Antonia

AU - Lewis, Hal C.

AU - Anthony, Laura G.

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