What Category Best Fits: Understanding Transgender Identity in a Survey of Autistic Individuals

Abstract

Introduction:

Calls for improved measures of gender identity to understand the experience of transgender individuals have grown rapidly in the past 5 years. The need for methodological innovation in this topic area has particular importance for the autistic population since a higher co-occurrence of transgender identities among autistic people has been documented but is not well understood. We use a survey with questions that reflect standards in 2018 to demonstrate how binary conceptualizations of gender did not adequately capture gender identities of transgender autistic individuals.

Methods:

Using descriptive statistics from a statewide survey of 1527 autistic adults (mean age 27.5 years), this study compared self-reported survey responses to close-ended standard questions at the time about gender identity to understand shortcomings in capturing this population authentically.

Results:

We found a mismatch between respondents answering that they were transgender, the sex assigned at birth, and gender identity on separate questions. We postulate that transgender men and women were likely selecting binary responses when asked about gender identity. Furthermore, we found that many qualitative responses reported in the self-selected “other” category reflected nonbinary identities and utilized specific terminology that revealed nuance in how they understood gender identities.

Conclusions:

We urge researchers to provide multiple flexible options when measuring gender identity in autistic populations as they are likely to encompass many identities. We endorse best practices for measuring gender identity for autistic research.

Community brief

Why is this an important issue?

Autistic people may be more likely to identify as transgender, or a gender identity different from their sex assigned at birth. Transgender autistic people may identify with binary gender identities, as men or women. Some transgender autistic people have nonbinary gender identities or identities that are different from these binary gender identities. If standard measures do not work well for transgender autistic people, their use may result in less accurate research. We present better ways to ask gender identity questions in autism research surveys.

What was the purpose of this study?

This study explored how accurately standard questions about sex and gender measure gender identity for transgender autistic people. We looked at how autistic people responded to sex and gender questions in a statewide survey completed in 2018. We suggest improvements in gender identity questions to include diverse gender identities reported by autistic people.

What did the researchers do?

We collected 1527 responses from autistic adults using the Pennsylvania Autism Needs Assessment completed in 2018. We examined descriptive statistics for how respondents answered one question about current gender identity, one question about transgender identity, and one question about sex assigned at birth.

What were the results of the study?

We found that these three standard questions did not reflect the gender identities of autistic people who took the survey. In response to the transgender identity question, 4% of autistic adults reported that they were transgender or nonbinary. Most (93.9%) of the sample reported binary identities, as male or female. Some autistic adults (2.3%) chose the “other” category on the current gender identity question. They reported a variety of binary gender identities or nonbinary identities. Many autistic adults did not answer questions about sex assigned at birth (26.7%) or transgender identity (27.1%).

What do these findings add to what was already known?

We did not know if standard gender identity questions measured transgender identities in autistic people correctly. These findings show that they do not, but also that current measures may not fully address a variety of gender identities, including nonbinary identities.

What are potential weaknesses in the study?

We use three survey questions from a survey that had already been used. The measures we used might not have captured how transgender autistic adults see themselves. Autistic adults who had support in completing the survey might have felt pressure from other people, such as caregivers, to answer a certain way.

How will these findings help autistic adults now or in the future?

Transgender autistic people have not been studied or supported extensively in the past. Better gender measures could help us learn more about transgender autistic people and possible unmet needs within this population. We suggest best practices that autism researchers can implement in surveys. This will ensure that research more accurately reflects transgender autistic adults' gender identities. Respectful and appropriate methods will improve autism research and translate into better understanding, support, and quality of life for transgender autistic adults.

Introduction

Better measurements of the transgender community are urgently needed.^1,2 It is critical to identify this population's experiences to align service delivery with their preferences and needs. However, only a few autism researchers have sought to understand the identities of transgender individuals in the autistic community.^3–5 This is especially pressing given the higher co-occurrence between autism and transgender identity than the general population.^6,7 We aim to advance measurement strategies that are both respectful and reflect the authentic gender identities of the autistic community.

Language shifts as cultural understandings and usages change, so we intend to use terms that reflect community identities and avoid pathologizing transgender individuals.⁸ Sex and gender are distinct concepts. Sex is typically classified at birth by medical providers based on external genitalia.⁶ Gender is a construct enacted through interactions and includes a continuum of identities. Transgender identity is an umbrella term referring to individuals whose gender identity does not match their assigned sex at birth.⁵ Cisgender individuals typically hold gender identities that align with assigned sex.⁵

Binary identities usually encompass those who identify as men or women, and can be cis or transgender,³ whereas nonbinary identities include those falling on a gender spectrum or people who identify with both or neither poles of the gender binary.⁹ Agender is an identity for someone who identifies as genderless or outside of gender. Someone who is gender nonconforming deviates from expected gender traits, and this term has an ambiguous history that can indicate transgender identity, especially in clinical settings.¹⁰

The aforementioned higher co-occurrence of transgender identity in the autism community highlights the need for more authentic research into this population.¹¹ First-person accounts and recent qualitative studies collecting data directly from transgender autistic individuals suggest that they are likely vulnerable to stressors and discrimination.¹² Furthermore, these sources suggest an underidentified population of nonbinary autistic individuals, many of whom hold deliberate and thorough views of their gender identity.^3,5,13 Currently, much of autism research has not reflected the nuances of this population. In the 82 articles comprising the most recent issues of the journals Autism, the Journal of Autism and Developmental Disorders, Autism Research, and Autism in Adulthood, 58 included analyses that conceived of gender in binary ways, and 12 examined gender beyond the binary. However, some of these articles categorized nonbinary identities as “other” or framed gender nonconformity in other stigmatizing ways. Conceiving of gender as a binary reflecting sex assigned at birth is problematic for a number of reasons; it does not accurately reflect the gender identities in the autistic population, advances findings that are not generalizable to transgender autistic people, and perpetuates ideas that cisgender identities are standard and normal, rather than looking at gender as a socially constructed spectrum.

Social scientists in general have long classified gender as a social construction that extends beyond the body.^14–16 Individuals perform their gender in interactions. In line with this theorizing, the neuroqueer framework, which originates from queer autistic scholars, reflects a shift from pathologizing differences associated with autism and queer identities to reframing them as forms of human diversity.^17,18 Neuroqueering involves liberation from non-autistic norms and gender roles in conjunction with the conceptualization of gender as fluid and socially constructed rather than fixed and objective.

As the transgender community advocates for greater acceptance and inclusion within broader society, they note the importance of measures that reflect the dynamic changes of identity and language in the transgender community.^1,10 Transgender advocates have called for widespread data collection efforts, especially the U.S. Census, to incorporate gender identity.^13,19,20 They have tasked researchers with incorporating robust measures of gender identity to address inequities for transgender populations, inform policy, and guide research and funding priorities. Transgender people experience barriers to health services, discrimination, and victimization, contributing to disparities in health, mental health, and mortality.^2,21–23 We expect these disparities to be magnified for transgender autistic people given similar outcomes with autistic people in general. Gender identity measures that do not address these pluralities result in undercounting transgender people in research.

Using a 2018 survey of autistic adults, we examined answers given to questions that were standard at the time and sought to capture multiple gender identities. However, they do not necessarily reflect the multitude of possible gender identities within the autistic community or the growing awareness of gender identities that is more current. We sought to understand how respondents identify in varied ways given the limited options. We intended to demonstrate how questions that did not incorporate best practices do not reflect the transgender population in a given autistic sample to argue for improved measures. We use these results to advocate for improved measurement strategies when studying the autistic population and encourage autism researchers to refine their measurements of gender identity.

Methods

Data source

We analyzed data collected as a part of the Pennsylvania Autism Needs Assessment (PANA), a large statewide survey conducted between May 2017 and June 2018. This was the second iteration of the PANA, a survey of caregivers of autistic individuals and autistic adults. We use the sample of autistic adults for this analysis. We collected an array of self-reported demographic and clinical information. The inclusion criteria were individuals on the autism spectrum.

All state residents enrolled in Medicaid at any point between 2005 and 2017 and had a claim or encounter with an autism spectrum disorder diagnosis (International Classification of Disease [ICD]-9 299.XX or ICD-10 F84.X) received a recruitment letter in the mail. However, enrollment in Medicaid was not a requirement for inclusion since survey invitations were provided to autism-specific advocacy and support organizations across the state as well. Invitations featured descriptions in Spanish and English describing the study and provided a link for the survey. Participants received a contact phone number and email so that individuals could request a paper copy of the survey. Participants could also call a phone line for assistance in completing the survey.

A certified translation company translated the survey into 14 languages. If surveys were completed in languages other than English, individuals fluent in each language recorded an English version. Respondents had the option of completing the survey with help from others, but no participants requested assistance. A total of 1527 autistic adults responded to the PANA. The institutional review board at Drexel University approved this study.

Survey instrument

The PANA asked respondents three questions pertaining to gender identity. The first question asked about current gender identity with the mutually exclusive options of “male,” “female,” and “other” with an optional free text box. The second question asked respondents if they identified as transgender or gender nonconforming, with answers of “yes,” “no,” or “prefer not to answer.” The last asked about sex assigned at birth, with options “male,” “female,” “intersex,” and “prefer not to answer.” Figure 1 includes these questions.

FIG. 1.

Descriptive statistics on responses about sex assigned at birth and transgender/nonconforming identity stratified by current gender identity.

Data analysis

We generated one-way frequencies, including counts and proportions, for the full sample of 1527 autistic adults who responded to the PANA. We generated frequencies for survey items about gender identity, sex assigned at birth, and transgender and gender nonconforming identity. We analyzed qualitative answers using open coding techniques in the software Excel.²⁴

Results

The results of this study speak to the existing transgender population in 2018. We primarily use them to demonstrate how standard questions at the time did not adequately capture the diversity of gender identities by highlighting the incongruity of answers selected. Figure 1 details the responses to the three questions focused on gender identity with some demographic context. The current gender identity question reflects 93.9% reporting binary identities (either male or female). Of those who answered the question about transgender/gender nonconforming identity, 94.4% reported that they were not. The reported sex assigned at birth and current gender identity was congruent for 97% of the sample that was not missing on these measures.

Of all respondents asked about current gender identity, 35 or 2.3% of the sample selected “other.” Eight qualitative responses reflected binary transgender identities, such as “transman.” In the transgender identity question, 61 of 1527 (4%) individuals selected transgender or gender nonconforming. There are high levels of missingness in responses to the transgender identity question (414 respondents or 27.1%) and the sex assigned at birth question (408 respondents or 26.7%) versus the current gender identity question (58 respondents or 3.8%) and the rest of the survey. We note that the current gender identity question did not have a “prefer not to answer” option.

The qualitative responses to the “other” option in the gender identity question reveal a consequential number of nonbinary identities. Of the 27 respondents who qualitatively answered the “other” option on this question, 21 (78%) answers reflected identities outside of a binary categorization. These findings suggest a prevalence of nonbinary identities beyond previous research estimates.

Not only did these respondents describe nonbinary gender identities, but they were also incredibly specific and reflected nuanced understandings of gender. One respondent answered that they were transgender broadly. One respondent wrote in that they were intersex, a biological state where an individual's sex is ambiguous at birth. Most gave specific names to encompass identifying outside of the binary, such as “non-binary,” “agender,” “two spirit,” “gender neutral,” “genderqueer,” “androgyne,” and “demi-girl” (a nonbinary identity for those assigned female at birth who do not identify with being a woman²⁵). Two gave fuller descriptions of their sex assigned at birth and what pronouns they used. One respondent reported being Chinese with their gender identity, reflecting consideration of ethnicity. Two respondents compared their gender identity to objects, potentially in seriousness or to intentionally obfuscate.

Discussion

We used standard questions about sex and gender in a 2018 survey to indicate how these measures do not adequately capture the autistic transgender population given the growing awareness of gender identity, and advocate for improved approaches. This study not only underscores the importance of asking autistic individuals their gender identities but also emphasizes that the framing of gender questions can have a significant impact on responses. Better measures of gender identity in autism research could support and inform training for clinicians and service providers and changes to the service delivery system.

Autistic people within the transgender community may identify with a broad range of identities in a variety of ways and measures should reflect gender identity categories relevant to them. Following data collection in 2018, the transgender autistic population has likely continued to grow (especially among nonbinary individuals) given more widespread knowledge and acceptance of transgender identities, especially in autistic community spaces such as Autistic Women and Nonbinary Network and Autism Self Advocacy Network, although no literature is focused on this topic.

Triangulation of the descriptive statistics demonstrates that individuals provided differing answers to gender questions based on how the questions operationalized gender identity. The differences in how many individuals identified as transgender versus those who chose “other” as a gender identity versus reported incongruence with sex assigned at birth and current gender indicate transgender individuals with binary identities often select binary categories when asked about gender, consistent with findings in the general population.²⁶ Many transgender people do not consider their sex at birth or transgender experience as relevant to their current gender identity, identifying as a man or woman rather than a transgender man or transgender woman, which results in the underidentification of transgender people with traditional gender measures.²⁶ We can more confidently assume this based on the smaller number of responses in the qualitative “other” category that reflected binary transgender identities.

Similarly, differences in missingness may indicate more respondents identified as transgender than captured in the questions or they may not have understood the transgender identity question specifically. Indeed, the notably high rates of missingness on the transgender identity question may have been due to concerns around stigma and confidentiality from this population. It may also indicate some respondents were unfamiliar or uncomfortable with the themes in the question.

These findings suggest a prevalence of nonbinary identities not thoroughly examined in the current academic autism literature. This indicates a need for further focus on definitions of gender outside of the binary in the autistic population. Nonbinary identities are valid, and nonbinary individuals have the right to access care and support, including services initially created based on binary conceptualizations of gender. These findings reveal that autistic individuals hold diverse and nuanced views of their gender identities. This survey was created in collaboration with autistic individuals. We encourage this practice. Transgender autistic individuals should be included specifically to develop respectful and accessible gender identity measures.⁴ We urge autism researchers to adopt methods to include autistic people with learning and communication differences in research capturing gender identity and address issues around proxy-reported gender identity, as suggested by previous research.⁴

We suggest at least two gender identity questions be set forth in surveys of autistic individuals. In alignment with best practices for ascertaining gender identity,^1,2,27 we recommend: a two question approach: one question about gender identity and a second question about transgender experiences.^26,28 Additional recommendations include allowing participants to select multiple identities and including an open response text box that participants can use if their identity is not enumerated.²⁹ This question need not be an exhaustive list but rather should encompass “man,” “woman,” “transgender,” “intersex,” “agender,” “genderqueer,” “gender-fluid,” and “non-binary.”²⁷

While we support a final option that includes a text box, we discourage using “other,” which centers cisgender understandings of identity.¹ Instead, an option phrased as “not listed” would encourage individuals to write in how they want to identify in their own way. Researchers can combine both qualitative and quantitative questions regarding beliefs about gender, how gender identity has changed over time, and how respondents understand gender. We believe that these questions would more accurately capture the nuances of this population, which is integral for the research and support of the autistic transgender community.

This study demonstrates the limitations of gender identity questions that use binary logic. However, further limitations apply. First, we do not know if some respondents answered with other adults present. Autistic adults who are institutionalized or rely on caregivers may have their queer identities policed,³⁰ meaning some respondents may not have been given the opportunity to answer these questions honestly. Second, we are unsure of the exact mechanism causing missingness for the transgender identity and sex assigned at birth questions.

Qualitative interviews of autistic individuals about gender focused on this group would have complemented quantitative findings. Third, we do not have a means to identify if respondents have a formal autism diagnosis, and how this may impact our sample and the generalizability of findings. Fourth, these measures conflate transgender identity and gender nonconforming identities as they fail to fully capture all binary and nonbinary gender identities. Finally, this was a survey conducted in one state, although a large, geographically, and culturally diverse state, with specific recruitment mechanisms.

Conclusions

This study uses responses from a 2018 survey of autistic individuals to ascertain how respondents define their gender identities. We found that individuals identifying as transgender define their gender identities differently based on the construction and framing of the questions. For example, the higher rate of individuals identifying as transgender versus selecting “other” on a gender identity question indicates that many transgender men and women may select binary gender identities. Furthermore, we analyzed qualitative write-in answers to “other” to find specific identities outside of the gender binary. We urge all autism researchers using or developing surveys to consider improved gender identity measures in consultation with transgender autistic individuals.

Authorship Confirmation Statement

H.S. conceptualized the piece and contributed to each section. T.G. contributed to the literature review, introduction, and discussion. A.B. performed all statistical analyses, including identifying the subsample of data. L.S. contributed to conceptualization, writing, and spearheading data collection for the survey used.

Author Disclosure Statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding Information

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Autism Services, Education, Resources, and Training Collaborative (ASERT), funded through the Pennsylvania Bureau of Supports for Autism and Special Populations, Pennsylvania Office of Developmental Programs, Department of Human Services. This project was also supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UJ2MC31073: Maternal and Child Health-Autism Transitions Research Project. The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. Government.