Positive Approaches Journal, Volume 11, Issue 1
Fraser | 26-38
Volume 11 ► Issue 1 ► May 2022
Autistic and
Transgender: Support at the Intersection
Cori L. Fraser, LSW
Abstract
It has been known for
at least the last decade that gender dysphoria seems to be more prevalent among
autistic people than in the general population.1 While
this has led to a great deal of speculation about the potential for shared
etiologies in the literature2,3, until recently, there has been very
little published regarding the support of individuals who are both autistic and
transgender. This manuscript attempts to begin to correct this dearth by
addressing the needs of autistic and transgender individuals through a novel
combination of evidence-based intervention for both autistic and transgender
individuals, clinical experience, and the lived experience of the author, an
autistic and transgender social worker working primarily with autistic and
transgender adults in Pittsburgh, Pennsylvania.
A Note on Language
This document uses identity-first language to refer to autistic and disabled people per the American Psychological Association’s 2021 guidance4 as well as author preference. Additionally, transgender identity and diagnosis of gender dysphoria are used interchangeably herein despite the fact that, some individuals with gender dysphoria may eschew the transgender label or choose not to pursue gender transition.
Background
Since the early 2010s, a number of studies have found that autism is many times more prevalent in populations being treated for gender dysphoria1 and that gender variance is much more common among autistic people.2 This data, as well as the widespread experience of individuals living at this intersection and their networks of support, reflect an urgent need for tools for our supporters, both formal and informal, and a roadmap that individuals in need of support can use to advocate for the implementation of a best practice model to meet their needs. This call-to-action is especially urgent given extant research on the intersection of disability and transgender identity which shows that disabled transgender individuals are more likely to face discrimination when attempting to access mental health centers (17.3% v. 6.2% of transgender people without disabilities), drug treatment programs (4.7% v. 2.0%), rape crisis centers (7.8% v. 3.3%), and domestic violence shelters (9.9% v. 3.5%).5 Further, there is overwhelming data reflecting that transgender individuals are much more vulnerable to suicidal ideation and completed suicide than cisgender peers and suicide risk is vastly decreased by having a supportive family or, in the case of youth, a single supportive adult.6,7
Supporting Autistic
Transgender Individuals
Identify and treat gender dysphoria
The standards of care for gender dysphoria are published by the World Professional Association for Transgender Health. Clinicians working with transgender individuals, regardless of neurotype, should be at least passingly familiar with the most current Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People. As of the seventh version of this document, published in 2012, WPATH recommends a largely informed consent approach to treating gender dysphoria, including among disabled people.8 That is, it advocates that individuals who express gender dysphoria and who are able to meaningfully consent to the risks of intervention to have access to those interventions. An important note here, while “gender dysphoria intervention” often means irreversible interventions such as surgery or hormone therapy, interventions also include fully reversible steps such as using a different name or pronouns, experimenting with wardrobe and hairstyle, and socially embodying the individual’s target gender.
Hormone therapy and surgery
Often discussions around
transgender identity delve into the particulars around gender affirming hormone
replacement therapy (HRT) and gender confirmation surgery (GCS) as well as
puberty suppression for adolescents. This discussion is particularly important
as these interventions carry significant weight as the only long-term,
evidence-based interventions for gender dysphoria, and later regret associated
with these interventions is exceedingly rare.9 There is evidence
that these interventions are literally lifesaving for many transgender
individuals, as they greatly reduce suicidality in this population.10,11
Further, puberty suppression is fully reversible12 and there is
significant evidence that puberty suppression leads to radically lower odds of
lifetime suicidal ideation and attempts.13
While many parents and providers present concerns that HRT and GCS are irreversible and individuals may later come to regret these decisions, supporters of Autistic transgender individuals must critically consider the evidence that these interventions increase wellbeing and decrease severe depression and suicidality in the vast majority of individuals who receive them.
Autism and gender identity
While it is well established that transgender identity is more prevalent among autistic individuals, that does not mean that this overlap is always simple or easily identified.14 Transgender identity can be easily dismissed as a trait of autism by family or clinicians without transgender or autism expertise. Further, due to the propensity for autistic people to have more rigid patterns of thinking (“black-and-white thinking”), autistic people may struggle to identify their gender struggles, and cognitive flexibility issues may make it difficult for them to understand gender as potentially fluid or changeable. Executive function difficulties and struggles with future thinking may also make it difficult to assess for understanding and informed consent associated with interventions. Impairments of verbal speech can also add a confounding factor. While these issues may mean that some autistic individuals recognize their gender differences later in development than non-autistic peers, they should not be understood as limiting access to identity or intervention, especially when interest in gender transition/exploration or expression of gender dysphoria is enduring over time.
Recognize minority stress
The minority stress model proposes that stigma, discrimination, and hostile social environments produce the higher rates of distress and mental health disorders seen among minority populations.15 This model can be applied to both autistic people16 as well as transgender individuals. In fact, transgender autistic individuals often report a high degree of alienation from both the autistic and Lesbian, Gay, Bisexual, Transgender and Questioning+ (LGBTQ+) communities, where the autistic community and autism supports do not understand their transgender identity and the LGBTQ+ community has misconceptions about their autistic identity.17 Moreover, there is evidence that individuals living at the intersection of autism and disability experience a higher degree of discrimination5 and violence18 across contexts.
Naming the structures
Psychoeducation is a central aspect of support for any population, but for autistic individuals, this can be of additional importance due to the prevalence of social isolation and the tendency for cognitive rigidity.19 For many, access to the language to describe their internal experience of gender may be entirely novel. Additionally, by helping individuals locate internalized oppression (ableism, transphobia) as a problem with society rather than a problem within themselves, supporters can help individuals understand their struggle in the context of an unjust society, improving their self-concept and helping them build the internal model required for self-advocacy.20 When support is built on a foundation of anti-oppressive practice, individuals are enabled to build a self-image independent from a societal narrative that frames disabled and transgender people as broken, inferior, or deviant.
Address Disability Needs
While gender dysphoria is often deeply distressing and urgent to address for individuals, disability supports must be maintained for individuals as they transition. Executive function, social skills, and emotional support are particularly important during gender transition.20 Gender transition may mean managing new medications, grooming routines, medical appointments, and relationships with doctors, therapists, and peers, as well as managing new or previously suppressed feelings around the body, sexuality, and the experience of moving through the world in a new social role. Further, while not reflected in the literature, individuals may find themselves ready to process trauma that was previously unexplored when their gender dysphoria is adequately controlled, and they are able to establish safety in their body. This means that support around disability needs must be maintained through gender transition. However, stability should not be a limiting factor in access to transition, as the alleviation of gender dysphoria may actually improve overall wellbeing and reduce behaviors associated with distress.
Connect with
Community
Chosen family has long been a central aspect of LGBTQ+ community. Historically, LGBTQ+ people formed chosen families as a survival strategy in the face of rejection from their families of origin. However, as familial rejection has become rarer in most communities, chosen familial has served a complementary role to the family of origin.20 These constructed families are particularly important to the community due to their roles in providing help navigating systems, providing emotional support, and providing mutual aid. By connecting individuals with autistic and transgender community, supporters give individuals access to social connection, mutual support, and shared experience that can help individuals understand their own journeys.14
Support the
Supporters
Both formal and
informal supporters must also have supportive spaces to learn, share, and seek
advice. Ideally, this includes teaching on a range of topics associated with
the intersection of autism and transgender identity, the sharing of medical and
legal resources, and spaces where supporters can consult others supporting
individuals navigating similar identities.14 This is especially
important for families of individuals who are living in their family home or
who are under legal guardianship.
When family is not supportive
There is a fundamental
challenge when an individual is under the age of majority, financially
dependent, or under guardianship of family members who are not supportive of
their transgender identity. This is made especially complex given the high
rates of severe depression and suicidality seen in autistic and transgender
people without access to transition. Education remains the most effective tool
in these situations, as many families simply lack information about diverse
gender identities.22 However, some families may experience a strong
negative reaction to this information about their children, up to and including
mourning as if the transgender individual had died. These families may need
time to process their grief for the future they envisioned for their child as
they learn more about what it means to be transgender. Other families may
experience difficulty reconciling their child’s identity with an ideology or
religious belief, and in some cases, the families can be connected with
affirming communities within their faith.
Over time, many, but not all, families will
develop the cognitive flexibility, understanding, and connections they need to
gain comfort with their child’s identity. For families that are not able to
adapt in this way, it can be important for the individual’s wellbeing to
maintain affirming contact with them to the extent possible. That is,
supporting the individual in exploring and expressing their gender identity to
the extent that is safe while they are in an environment that is not affirming.
Continuing education
For formal supporters, continuing education and training is indispensable. It has only been in the past two decades that research and standards regarding transgender health have rapidly developed and in the last five years that the intersection of transgender and autistic experience has received attention. While there remains a dearth of information, there has been a rapid proliferation of research regarding this population—organizations such as the Academic Autism Spectrum Partnership in Research and Education and the Autism Intervention Research Network on Physical Health are utilizing community based participatory research to work with autistic and transgender individuals to develop supports for this underserved population.
Direct support workers and intersectionality
This discussion would not be complete without an acknowledgement that direct support workers (DSPs) in Pennsylvania are disproportionately women, disproportionately Black and Brown, and disproportionately live in poverty and rely on public assistance.23 In order for these supporters to be able to implement these recommendations in their day-to-day work with autistic transgender individuals, they must, themselves, have the tools they need to thrive. This means that dismantling structural racism, ableism, and transphobia in direct support organizations, legislating fair wages and benefits DSPs, and creating more affordable, high-quality childcare, are indispensable parts of supporting autistic and transgender individuals.
Conclusion
Individuals living at the intersection of transgender identity and autism face a number of challenges, compounded by oppression, familial and community rejection, and mental health complications. Through access to affirming care, education, disability supports, authentic community, and chosen family, and continuing education and support for their support workers, autistic transgender people can build the support they need to thrive.
References
1. de Vries ALC, Noens ILJ, Cohen-Kettenis PT, van Berckelaer-Onnes IA, Doreleijers TA. Autism Spectrum Disorders in Gender Dysphoric Children and Adolescents. Journal of Autism and Developmental Disorders. 2010;40(8):930-936. doi:10.1007/s10803-010-0935-9.
2. Jones RM, Wheelwright S, Farrell K, et al. Brief Report: Female-To-Male Transsexual People and Autistic Traits. Journal of Autism and Developmental Disorders. 2011;42(2):301-306. doi:10.1007/s10803-011-1227-8.
3. Strang JF, Kenworthy L, Dominska A, et al. Increased Gender Variance in Autism Spectrum Disorders and Attention Deficit Hyperactivity Disorder. Archives of Sexual Behavior. 2014;43(8):1525-1533. doi:10.1007/s10508-014-0285-3.
4. Disability. https://apastyle.apa.org. https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability. Accessed April 1, 2022.
5. Kattari SK, Walls NE, Speer SR. Differences in Experiences of Discrimination in Accessing Social Services Among Transgender/Gender Nonconforming Individuals by (Dis)Ability. Journal of Social Work in Disability & Rehabilitation. 2017;16(2):116-140. doi:10.1080/1536710x.2017.1299661
6. Ryan C, Russell ST, Huebner D, Diaz R, Sanchez J. Family Acceptance in Adolescence and the Health of LGBT Young Adults. Journal of Child and Adolescent Psychiatric Nursing. 2010;23(4):205-213. doi:10.1111/j.1744-6171.2010.00246.x.
7. The Trevor Project. National Survey on LGBTQ Mental Health. New York, New York: The Trevor Project, 2019.
8. World Professional Association For Transgender Health. Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People. World Professional Association For Transgender Health; 2012.
9. CM W, NM N, CJM de B, et al. The Amsterdam Cohort of Gender Dysphoria Study (1972-2015): Trends in Prevalence, Treatment, and Regrets. Yearbook of Paediatric Endocrinology. Published online September 11, 2018. doi:10.1530/ey.15.6.4
10. Akhavan AA, Sandhu S, Ndem I, Ogunleye AA. A review of gender affirmation surgery: What we know, and what we need to know. Surgery. 2021;170(1):336-340. doi:10.1016/j.surg.2021.02.013.
11. Green AE, DeChants JP, Price MN, Davis CK. Association of Gender-Affirming Hormone Therapy With Depression, Thoughts of Suicide, and Attempted Suicide Among Transgender and Nonbinary Youth. Journal of Adolescent Health. 2021;70(4). doi:10.1016/j.jadohealth.2021.10.036.
12. Hembree WC, Cohen-Kettenis PT, Gooren L, et al. Endocrine Treatment of Gender-Dysphoric/Gender-Incongruent Persons: An Endocrine Society* Clinical Practice Guideline. The Journal of Clinical Endocrinology & Metabolism. 2017;102(11):3869-3903. doi:10.1210/jc.2017-01658.
13. Turban JL, King D, Carswell JM, Keuroghlian AS. Pubertal Suppression for Transgender Youth and Risk of Suicidal Ideation. Pediatrics. 2020;145(2). doi:10.1542/peds.2019-1725.
14. Strang JF, Knauss M, van der Miesen A, et al. A Clinical Program for Transgender and Gender-Diverse Neurodiverse/Autistic Adolescents Developed through Community-Based Participatory Design. Journal of Clinical Child & Adolescent Psychology. Published online May 6, 2020:1-16. doi:10.1080/15374416.2020.1731817.
15. Meyer IH. Prejudice, Social stress, and Mental Health in lesbian, gay, and Bisexual populations: Conceptual Issues and Research evidence. Psychological Bulletin. 2003;129(5):674-697. doi:10.1037/0033-2909.129.5.674.
16. Botha M, Frost DM. Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health. 2018;10(1):215686931880429. doi:10.1177/2156869318804297.
17. Hillier A, Gallop N, Mendes E, et al. LGBTQ + and autism spectrum disorder: Experiences and challenges. International Journal of Transgender Health. 2019;21(1):98-110. doi:10.1080/15532739.2019.1594484.
18. Messinger AM, Guadalupe-Diaz XL, Kurdyla V. Transgender Polyvictimization in the U.S. Transgender Survey. Journal of Interpersonal Violence. Published online August 31, 2021:088626052110392. doi:10.1177/08862605211039250.
19. Strang JF, Meagher H, Kenworthy L, et al. Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents. Journal of Clinical Child & Adolescent Psychology. 2016;47(1):105-115. doi:10.1080/15374416.2016.1228462.
20. Baines D. Beyond the Social Model of Disability. In Doing anti-oppressive practice: Social Justice Social Work. Fernwood Publishing; 2017: 153–171.
21. Jackson Levin N, Kattari SK, Piellusch EK, Watson E. “We Just Take Care of Each Other”: Navigating “Chosen Family” in the Context of Health, Illness, and the Mutual Provision of Care amongst Queer and Transgender Young Adults. International Journal of Environmental Research and Public Health. 2020;17(19):7346. doi:10.3390/ijerph17197346.
22. Abreu RL, Rosenkrantz DE, Ryser-Oatman JT, Rostosky SS, Riggle EDB. Parental reactions to transgender and gender diverse children: A literature review. Journal of GLBT Family Studies. 2019;15(5):461-485. doi:10.1080/1550428x.2019.1656132.
23. Pennsylvania Long-Term Care Council. A blueprint for strengthening Pennsylvania’s direct care workforce. Retrieved from: https://www.aging.pa.gov/organization/PennsylvaniaLongTermCareCouncil/Documents/Reports/LTCC_Blueprint%20for%20Strengthening%20Pennsylvania%E2%80%99s%20Direct%20Care%20Workforce_April2019.pdf. Accessed April 1, 2022.
Biography
Cori Frazer is a multiply disabled, nonbinary licensed social worker (LSW) and activist. Having worked in progressive organizing since they were a teen, they have spent the last decade working to help build strong, vibrant queer and disabled communities. Co-founder of the Pittsburgh Center for Autistic Advocacy (PCAA), Cori’s work is reflective of their deep belief in interdependence and liberatory praxis. Under Cori’s leadership and practice of innovative models of community support and mutual aid, PCAA has served hundreds of disabled adults in western and central Pennsylvania.
Contact Information
Cori L. Fraser, LSW
Pittsburgh Center for Autistic Advocacy
Executive Director