Dr Emma Neilsen shares their tips and ideas about how to make your autism research gender inclusive (and why this matters when working with autistic people) as part of our Research Toolkit.

We can all try to be more gender inclusive with the language we use. We know that autistic people are more likely to be gender diverse than non-autistic people, so if you are a researcher in this space it is important to think about the terms that you use, the assumptions that you might be making and how and why you are asking about gender in the way that you are

As a non-binary autistic researcher, I’ve written this for researchers who know they want to be more gender inclusive but feel overwhelmed about where to start. It can feel confusing and hard to get ‘right’, but that does not mean that we should not try. Think of these as tips to help you get to a more positive space, rather than hard and fast rules.

Useful gender definitions

We’ll start with a few definitions for basic terms. But this is a huge topic, so this won’t capture everything.

  • Gender refers to who someone is, it’s about someone’s personal and social identity. Many people conflate this with sex, but sex more accurately describes someone’s bodily organs and chromosomes (also, sex isn’t binary either, but I digress!)

  • Non-binary is a term for anyone who doesn’t neatly fit into the binary "male" or "female". Like how autism is a spectrum, and there is huge variety in autistic people’s experiences, gender is also a spectrum. Non-binary is an umbrella term, with a rich variety of differences in people’s gender expression within this spectrum. This could include identities like agender (when someone has no internal sense of feeling male or female or any combination of these) and bigender (when someone’s gender identity is a combination of more than one gender or is sometimes one gender and sometimes another).

  • Transgender is a term for people who live as a different gender from the one they were assigned at birth. Someone may be transgender and binary, or they could be transgender and non-binary

  • Cisgender refers to someone who lives as the same gender as the one assigned to them at birth.

Why being gender inclusive is especially important for autism researchers

Autistic people are more likely to be gender diverse than non-autistic people. While it is always important to be as respectful and inclusive as we can be across the board, if you are an autism researcher, it’s much more likely that you’ll come across more people who are gender diverse throughout your career.

When researching autistic people’s experiences, creating trust is paramount. Autism research hasn’t exactly had a rosy history of affirming autistic people’s experiences, and so anything researchers can do to build trust is essential. Of course, the best way to do this tends to be a flexible and meaningful programme of involvement, but acknowledging people’s gender can also be an important component.

By trying your best you are saying to gender-diverse autistic people "I see you and I take your gender seriously. I want to include you." You are also communicating important values to cis-gender people. This helps to cultivate the safe and respectful space which is the backdrop to successful partnership working and research enquiry. It is not always about getting things ‘right’; it is far more about intention and values and showing that someone’s experiences and identity matter to you (and you are doing your best) will take you a long way.

If you are researching something like autistic people’s mental health, someone’s experiences around identity (and other people’s reactions to identity) could be an important contributing factor to their mental health. By acknowledging gender diversity through things like asking for pronouns, you are giving people the chance to open up about things that matter to them.

Tips for autism researchers to be more gender inclusive

  1. Normalise sharing pronouns

    Although this isn’t specific to researchers, it’s good to get the basics right.

    Simple ways you can normalise pronoun sharing:
    -adding your pronouns to email signatures and name badges
    -modelling sharing pronouns in any introduction in group sessions
    -inviting people to share their pronouns in application forms. For example, in things like involvement group application forms (this should not be mandatory).

    People who are gender diverse do not always look androgynous. It’s best not to assume pronouns. Sure, sometimes you might be sharing your pronouns in a room full of cisgender people, but the moment there’s a non-binary person in that space, they will feel seen and validated and know it’s a space where people are respectful.

    If someone uses multiple pronouns, such as she/they or they/he, you can always ask if they would prefer a mix of pronoun use, or if they have a preference. Some people who use multiple pronouns genuinely don’t mind which you use, whereas others might feel affirmed by you using they/them as it acknowledges their non-binary identity. People’s pronouns might change over time.

    However, be wary of using they/them as a blanket term for everyone. For example, a trans woman may have spent her entire life fighting to be seen as a woman, so using they/them pronouns might minimise her experience.

    It can be a very negative experience to be misgendered. Some people, might also be anxious about accidentally misgendering someone as they do not know their pronouns, particularly in group sessions. This is another reason why modelling safe and respectful pronoun sharing is important.

    Top tip:
    sometimes you might see people referring to pronouns as ‘preferred pronouns’. Pronouns aren’t what someone prefers, they are simply their pronouns.

    While it is important to normalise sharing pronouns, do not make it feel mandatory. Some people might not feel confident or comfortable sharing their pronouns (in a particular space or at all) and that is okay. For me, understanding my own identity was quite a process and there were times when the best answer I could have given you was that I did not know. Do not push people, model the option to share if someone feels safe and wants to.

  2. Be scrupulous with your surveys

    Spectrums rarely fit neatly into tick boxes, so creating a gender option on a form to capture the richness of people’s gender expressions and experiences will always be challenging. As a researcher, you want as full a picture and understanding of whatever it is you're researching and you have to embrace some of the complexities of life to get there.

    It's important to think about why you are capturing gender information, whether it is necessary to collect it in the first place and how you will be analysing and reporting the data.

    When asking people their gender in a survey, providing a free text box for someone to use is the most inclusive option. However, this may not always be feasible.

    If you are using a predefined list of identities, consider whether you are restricting participants to a single response or whether someone can select more than one option to describe themselves (and make sure you understand why you have made the design choice you have). For example, someone could select multiple of the following:

    -Woman
    -Man
    -Transgender
    -Non-binary/non-conforming
    -Prefer not to respond

    Be wary of using the term "other" as it can make people feel excluded (or literally "othered"). Instead, offer options such as "prefer to self-identify", or "questioning". The way we talk about gender is constantly evolving, so it’s worth checking latest best practices before starting your survey. If you can, give people a free text box to offer feedback on your surveys. Participants may be able to offer constructive feedback on how you’ve asked their gender, which could inform your next survey.
  3. Being gender inclusive when researching menopause, pregnancy, periods (and the like)

    Not everybody who experiences these things will have the gender identity of "woman". They may be non-binary, or trans masculine, for example. The most inclusive way to is to simply use the term "people".

    For example, "We ran a qualitative survey capturing the experiences of 50 autistic people who are menopausal or perimenopausal."

    If you captured gender information in the research, and it was relevant you could follow this up with something like ‘this included 43 women, six non-binary people and a trans man’

    You may also see people say "women and people assigned female at birth (AFAB)". This term can be useful if someone is describing themselves, e.g., "I was assigned female at birth", but when talking about a group of people it can easily collapse people back into the binary. Because of this, I don’t think this is the most helpful. It is also not the most accurate. For example, someone assigned female at birth could be a woman, non-binary, transmasculine or intersex. So, within the context of menopause, not everyone who is assigned female at birth will experience menopause.

  4. When you need to quote research that used binary language

    Although gender diversity is as ancient as humanity itself, it’s only relatively recently that terms like ‘non-binary’ have reached the common lexicon. This means you’re likely to need to reference research that has used binary language when talking about gender.

    When quoting research that is gender binary, I’d suggest showing some acknowledgement of your understanding of gender beforehand.

    For example, if you were talking about pregnant autistic people, and were referencing research that described all participants as women, you might say something like:

    ‘We’ll say “women” as that is accurate in terms of the research we’re citing, but we know not everyone who goes through pregnancy is a woman.’

    Or if a study was comparing something with men and women, you could say something like:

    "These studies compared the rates of anxiety in autistic men and women. The studies did not mention non-binary autistic people or transgender autistic people."

  5. Sometimes, you might have to take an imperfect approach and do the best you can with what is available.

    Sometimes you might have to approach your research in a way that you know might not be as gender inclusive as you would like.

    Imagine that you are planning a quantitative project. You might collect data about gender. You might plan to report the data just to describe the sample. However, you might be planning to use inferential statistics to compare between groups. If this is the case, you might have further thinking to do about the best way to capture data on gender.

    For example, you might anticipate that you will combine data before analysis (to have large enough group numbers for comparisons). It could be invalidating to give people a range of gender options to then collapse data and "erase" some identity options to an umbrella (e.g., reducing multiple options down to female; male; or non-binary before analysis). This is not to say that it would be wrong to do this. It is to say that it is important to be mindful about how that might feel for a participant or someone reading your research.

    When you feel like there isn’t a choice but to take an imperfect approach to something around gender, consider adding some context or explanation for why you are doing this. This can be especially helpful for autistic people. If you need to do this in a survey, make the most of tools like hyperlinks or hovering the mouse to reveal further text, to give someone more information.

Research in action - an example:

“When I was researching barriers to healthcare, I could see from the data that female and nonbinary participants seemed to report more barriers than males. They also had similar experiences of the types of barriers. When I was performing the statistical analysis, I compared both these groups with the male group to see how significant the difference was. I also used some methods that allowed all three variables to be compared. However, statistically, this may be weaker because the non-binary group was much smaller than the other two.”

Dr Charlotte Featherstone, Autistica's Research Partnerships Manager.

Final thoughts

If you can show you are trying, people can be quite forgiving if you don’t get things right 100% of the time.

By educating yourself and showing you are making strides to be inclusive, you help not only to build trust with gender-diverse colleagues, participants and experts by experience but cultivate a culture of openness and safety for all people that you work with.

A big thank you to Emma for sharing your tips. If you would like to submit content for the researcher toolkit.

Stock image credit: The Gender Spectrum Collection from Vice.