24 The Co-occurrence of Autism Spectrum Disorder and Gender Dysphoria
Maven Laberge (They/She)
Keywords: Autism Spectrum Disorder, Gender Dysphoria, Transgender, Neurodivergent, Neurotypical
Introduction
The co-occurrence of Autism Spectrum Disorder (ASD) and Gender Dysphoria (GD) typically go unnoticed within the adult population however, there has been a gradual increase in reports of GD and ASD over time. Both conditions are rare; with the global population prevalence rate for Autism Spectrum Disorder estimated at 1 in 100 and Gender Dysphoria at 1 in 5,000 (Coleman-Smith et al 2020). This means that Gender Dysphoria is more uncommon than Autism Spectrum Disorder individually and when they co-occur they become increasingly rare with a rate in one study being 6% of the sample group (Asperlagh et al., 2018).
Autism Spectrum Disorder is a neurodevelopmental disorder characterized by: impaired social interaction and communication skills, and restricted and repetitive behaviour, interests, or activities (DSM 5). Gender Dysphoria is characterized by distress, often accompanied by incongruence between experienced or expressed gender and the gender assigned at birth (DSM 5). Those who experience Gender Dysphoria generally want to alter their physical appearance to match their gender identity and how they view themselves internally.
There appears to be a high percentage of autistic traits and Autism Spectrum Disorder in those diagnosed with Gender Dysphoria when compared to the general, cis-gendered population (Cooper et al 2022). It was found that transgender adults were 3.03-6.36 times more likely to be autistic than cisgender people (Cooper et al 2022). However, it is unclear whether this is an actual increase or whether there is increased visibility, acceptance, and ease of obtaining transgender-related care, making it appear as though there is an increase. It is not likely that there is a single cause of Gender Dysphoria but rather a variety of biological, social, and psychological factors (Van Der Miesen et al 2016).
Theories:
There are varying hypotheses that have been proposed as explanations for how Autism Spectrum Disorder and Gender Dysphoria are linked; however, there is no consensus regarding what the link is. The theories listed below are some examples of the hypothesized links between Autism Spectrum Disorder and Gender Dysphoria.
1. Extreme Male Brain Theory.
According to this theory, people assigned female at birth have been wired to think empathetically while those assigned male at birth are wired to think more systematically. When there are high levels of testosterone, it results in an extreme male brain or male pattern of thought, which would lead to ASD and GD. This hypothesis potentially only applies to those assigned female at birth.
2. Social Interaction Difficulty
This theory is used to explain Gender Dysphoria and Autism Spectrum Disorder in children. An example that is commonly used to explain this theory is a child with autism that is bullied by the same binary (two opposite forms of gender i.e. Masculine – Feminine) gender may come to dislike them and grow to identify with the opposite gender due to the negative experiences they had.
3. Communication Issues
Those with Autism Spectrum Disorder find it difficult to communicate with others which may contribute to other people not picking up on the social cues about assigned gender. This could lead to the child not being regarded in a way that aligns with their assigned sex which could lead to Gender Dysphoria.
4. Manifestation of Autism
A child that is assigned male at birth and has Autism Spectrum Disorder may become interested in female clothes, toys, and activities which could lead to Gender Dysphoria. This theory claims that though this may appear as Gender Dysphoria it is in fact OCD (Obsessive Compulsive Disorder).
5. Rigidity
Those with Autism Spectrum Disorder may need more rigid structures and concepts. When it comes to gender differences they may experience difficulty understanding both their assigned gender and their experienced/desired gender. This could create distress within their gender identity which could lead to Gender Dysphoria.
Although these theories have been created by those who are thinking through the lens of the gender binary, and many of the stereotypes and expectations that come along with it, some of these theories do bring up certain experiences that adults with Autism Spectrum Disorder and Gender Dysphoria speak about in “Healthcare clinician perspectives on the intersection of autism and gender dysphoria”. In that study they have individual study participants explain their experiences with co-occurring Autism Spectrum Disorder and Gender Dysphoria. The personal experiences that they speak about regarding their gender have similarities or a common theme to the theories spoken about above (Cooper et al. 2022).
Study Participants’ Personal Experiences
The first topic brought up by the participants in the study “Healthcare clinician perspectives on the intersection of autism and gender dysphoria” by Cooper et al. (2022) is the experience of bodily distress which is covered in theory 5- “Rigidity”. The participants spoke about their experience with a variety of negative emotions regarding their bodies including depression, anxiety, anger, and disgust. Some experienced a dissociation from their bodies, explaining that they didn’t feel connected to their body and found that they were rigid within it due to it not matching their gender identity.
Puberty was especially distressing and surprising for these individuals as their bodies did not develop as they wanted/expected them to (i.e. the development of breasts and curves, or deeper voice and facial hair) (Cooper et al 2022). Some participants described this experience as “sensory dysphoria”; feeling distressed in their bodies due to the experiences of their body changing with no control over the outcome. One aspect that some with Autism Spectrum Disorder experience is confusion about things not applying to the strict rules they have in their head. This expected rigidity when it comes to gender identity can lead to gender dysphoria that is based on confusion about what their gender is. Many will either opt to reject gender or they will attempt to remain within the gender roles.
According to the World Professional Association for Transgender Health, a person must have received an assessment of Gender Dysphoria before any physical interventions can be made, but many gender clinics do not have clinicians that easily recognize Autism Spectrum Disorder which can create many issues for the person receiving the diagnosis (Coleman et al 2022). For transgender people to begin their transition (when an individual changes their external self to match their internal self) they must meet a standard assessment for gender dysphoria. However, the assessment for Gender Dysphoria was written with strict guidelines and parameters which do not include the complications and nuance that Autism Spectrum Disorder may create for an individual’s experience (Coleman-Smith et al 2020).
Clinicians in one study mention that those with co-occurring Autism Spectrum Disorder and Gender Dysphoria refer to their gender and experience Gender Dysphoria differently from those without ASD (Cooper et al 2022). Examples of this are, different thinking styles, social differences, and sensory sensitivities. They will also speak about their gender differently when compared to non-autistic people. Those who are neurotypical and cis-gendered typically describe gender as something that is innate and has certain roles that each gender characteristic fills. Many neurodivergent people describe gender as a social behaviour that they don’t understand, saying that they didn’t even realize that gender was a thing that existed. This can create issues when they are attempting to get diagnosed with Gender Dysphoria so that they may transition. Some admit to attempting to seem more neurotypical when they are in a gender clinic so that they have a higher likelihood of receiving a diagnosis (Cooper et al 2022).
Recommended Clinical Guidelines for Transgender People
These experiences that have been reported by transgender individuals may be due to the lack of clinical guidelines or formal consensus regarding how to treat Gender Dysphoria for those with Autism Spectrum Disorder. However, in the Journal of Clinical Child and Adolescent Psychology, researchers developed some recommendations that clinicians could use. These recommendations were made for children and adolescents but many of them can be applied, with some alteration, to adults as well (Van Der Miesen et al 2016).
1. If a clinician is not available that is knowledgeable in both Autism Spectrum Disorder and Gender Dysphoria, then a clinical team should be assembled that includes both Autism Spectrum Disorder and Gender Dysphoria specialists. It may take longer to diagnose and treat both Gender Dysphoria and Autism Spectrum Disorder, and it is recommended that the treatments not be rushed and that they be approved by a group of specialists (Van Der Miesen et al 2016).
2. There are similar treatments for Gender Dysphoria and Autism Spectrum Disorder. An individual will typically experience flexible thinking and communication skills, as well as better insight after the treatment for Autism Spectrum Disorder. The needs and concerns regarding gender should consistently be assessed and the patients should be given time to understand the concerns they have regarding their gender (Van Der Miesen et al 2016).
3. Individuals should receive an education regarding the topic of the co-occurrence of Autism Spectrum Disorder and Gender Dysphoria (Van Der Miesen et al 2016).
Although the above is mainly for children and their parents, when receiving treatment/assistance from gender clinics, many of these guidelines can be used when treating adults as well. These guidelines are useful and will make a patient’s experience at a gender clinic more open and understanding; however, not many adults have had positive experiences at these clinics. Accessing a gender clinic can have various barriers for people because of their autism and due to their reliance on the clinics to assist them in their transition, this can lead to their Gender Dysphoria not being treated.
Due to patients’ autism, Some interactions with these clinics have been described as a battle to gain the support of medical professionals. Participants in the Cooper et al study explained that when speaking to gender clinicians they had to come across as neurotypical since communicating with professionals was challenging for them (2022). This is because many of the questions that the clinicians asked about their experience with Gender Dysphoria were open-ended, which is quite difficult to comprehend and answer for those with ASD.
Conclusion and Recommendations
For those who have co-occurring Gender Dysphoria and Autism Spectrum Disorder, navigating their identities, and relationships, and consulting with professionals within the medical field continue to demonstrate that they experience certain hurdles that others are not aware of. With these two disorders, which are quite rare on their own, their occurring simultaneously can make it difficult to diagnose an individual properly. It also shifts how these disorders present themselves as their profiles can change from person to person. Despite there being a growing awareness of the existence of these disorders co-occurring, many, including clinicians, are unable to properly recognize this and treat them.
There continue to be more studies being published every year on this subject, and with that, the destigmatization and general knowledge grows. However, this is still a minuscule amount because belonging to one of these groups (being transgender or having ASD) already has stigmas surrounding them. Therefore, belonging to both may create increased stigmatization and discrimination against this group.
For change to truly occur clinicians will need to go through a screening process to ensure there are no internal biases that would interfere with their practice; education on GD and ASD would begin early on in a child’s schooling to remove stigma, and there would be established guidelines regarding how to properly treat an individual with co-occurring Gender Dysphoria and Autism Spectrum Disorder so that these disorders can be properly recognized and treated appropriately.
With these changes implemented it would allow those with GD and ASD to feel accepted and have a better understanding of themselves and their identity. It would create an environment early on in their lives to recognize their identity without an underlying fear of being discriminated against, and they would have the necessary resources to assist them. Currently, these changes are occurring but at a small scale due to individuals rather than a large group, company, or the government taking charge. Individuals making these steps to include these changes will be an example to be followed for building a better system.
References
Coleman E,Radix AE, et al. (2022) Standards of care for the health of transgender and gender diverse people, version 8. International Journal of Transgender Health 23(sup1).
Coleman-Smith RS, Smith R, Milne E, et al. (2020) ‘conflict versus congruence’: A qualitative study exploring the experience of gender dysphoria for adults with autism spectrum disorder. Journal of Autism and Developmental Disorders 50(8): 2643–2657.
Cooper K, Mandy W, Russell A, et al. (2022) Healthcare clinician perspectives on the intersection of autism and gender dysphoria. Autism 27(1): 31–42.
Heylens G, Aspeslagh L, Dierickx J, et al. (2018) The co-occurrence of gender dysphoria and autism spectrum disorder in adults: An analysis of cross-sectional and clinical chart data. Journal of Autism and Developmental Disorders 48(6): 2217–2223.
Psychiatric Association A (2022) DSM-5-TR classification. Diagnostic and Statistical Manual of Mental Disorders.
Shumer DE, Reisner SL, Edwards-Leeper L, et al. (2016) Evaluation of asperger syndrome in youth presenting to a gender dysphoria clinic. LGBT Health 3(5): 387–390.
Van Der Miesen AIR, Hurley H and De Vries ALC (2016) Gender dysphoria and autism spectrum disorder: A narrative review. International Review of Psychiatry 28(1): 70–80.
