General content warnings: abuse, neglect, suicide ideation, mental health, transphobia, death, substance use, ableism.

These are the two versions of my MRes (Masters in Research) dissertation, click for a plain language summary and click here for my research poster with summary.

Stories from across the “double rainbow” : trans and / or non-binary Autistic narratives [plainer language version]

[This is a plainer version, with terms explained, shorter sentences and no in text references. I also have a much shorter plain language summary here]

Western society – Europe and the USA – often think gender is binary (just female and male) however transgender people are 1.1% of the population. There are more trans people sharing their stories in research, books and online. This means transgender people can see people like them in lots of different places. Trans people are beginning to see themselves reflected in these different places. However, all these shared stories have seen lots of people being transphobic (really nasty and sometimes violent towards transgender people). People are talking about whether transgender people should be allowed to play in national sports and which bathrooms they ‘should’ be using.

People in the UK media (newspapers and TV) and politics argue about transgender things all the time. Transgender people are protected a little by a law called the Gender Recognition Act, which was written in 2004. This law means trans people can change the sex written on their legal documents (such as passports, driving license and birth certificate). Despite this law transgender people still experience fear and nastiness from many different people. People who do not like transgender people (called ‘transphobes’) say they are worried that women will not be safe in bathrooms and changing rooms if transgender women are allowed there too. They say this even though transgender women are more likely to be hurt and attacked than they are. Transgender people report hate crimes (crimes done to them because they are transgender) at a very high rate which is getting bigger.

The rise in hate crime towards transgender people is affected by laws. In the UK puberty-blockers (a medicine which slows down puberty) was made more difficult for under 16-year-olds to get. The child would have to go to their doctors, with their parents or carers permission, and then go to court to ask for permission from the judges too. This has made it harder for people to access puberty-blockers. This has change not to long ago and children now need to get permission from their parents and doctor. This did cause a lot of transgender children to be a very stressed and upset. They had to wait longer for help which may have made them sadder. All these changes to the law are really difficult to understand and remember which is not helpful to Autistic children.

Laws in the United Sates of America are also harmful. Governor Gregg Abbott, who is a politician in Texas, said that allowing children to have puberty blockers was ‘child abuse.’ Gregg made a law that punished anyone who helped transgender children. This makes Texas a really dangerous place for transgender children and their families to live. They have to keep their transgender identity a secret so that their family doesn’t get in trouble. This can cause the child and their family lots of sadness and pain. This is a big problem for Autistic transgender children who can’t go to the gender clinic (a hospital where transgender people are looked after) because their doctors think they don’t know anything about gender. Laura Kate Dale said (in 2019) that her doctor said that she didn’t understand gender or that people might trick her into believing things about herself which weren’t true. She also said that her family didn’t believe her about her gender as they didn’t think she knew what she was saying. Research (looking at things in lots of detail) and law making can be made better by talking to transgender Autistic people and seeing what they have to say.

Autistic transgender lives are a new area of research maybe because there are more gender divergent people (people who do not agree with their gender or sex told to them at birth) and because more people are getting diagnosed as Autistic. A lot of the research looks at how many people are both Autistic and transgender (sometimes this is called ‘prevalence rates’). This work has found that there are lots of people who are Autistic transgender, non-binary (belonging outside of female and male) or gender divergent. Some research has found that Autistic people are twice as likely to be transgender than non-Autistic people are.

Understanding why there are lots of Autistic transgender people is difficult. Some research looks at Autistic people who have gender dysphoria (a big sadness which come with their being seen as the wrong gender). This can ignore people who do not want to medically transition (get surgery or medicine to change their body) or those who can not get help with medical transition. This makes it difficult to know the number of people who are transgender and Autistic.

Those of us who do not fit into ‘autism’ and ‘transgender’ boxes are often ignored. Transgender Autistic stories may be better understood through Nick Walker’s idea called ‘Neuroqueer.’ This idea shows that Autistic people are more likely to queer different things in their life, this means that we make it different on purpose. We do this because we have a different culture (way of speaking and doing) to non-Autistic people. Transgender Autistic lives has been described by Nathan Morgan as living under the ‘double rainbow’ because Neurodivergent and queer colours are rainbow colours. This is why I have called this writing ‘Living under the double rainbow.’

Changing research ideas

Lots of the work on transgender Autistic people uses harmful language and ideas which harm us. Lots of the work uses a pathology paradigm (an idea which makes us look awful and sick), this work uses words like ‘impairment’ and ‘burden’ which makes us seem difficult and not normal. Too many non-Autistic, cisgender (non-trans) people do work which is really harmful. The Extreme Male Brain idea, written by someone called Simon Baron-Cohen, says that Autistic people are likely to be transgender because we all have man brains. But this forgets that not all men are the same and that not all transgender people are men! This ignores trans women and non-binary people (people who have lots of genders or no gender at all).

Lots of ideas in research start from the idea of ‘normal’ – Autistic people are not seen as normal, so lots of people think we can’t understand gender. Some people think that we are just obsessed with the idea of being transgender but that we aren’t really transgender. Some people think we are just confused. This means we are not allowed to be part of the transgender and non-binary community. Hillary, a trans Autistic person said this in 2020:

People make the argument that this is an autism thing, that this has something to do with the extreme male brain theory and that it’s totally fine to enforce gender-normativity on us because we don’t actually ‘get’ how gender works. I don’t actually get gender but neither do the people claiming I don’t understand gender (Hillary, 2020, p. 171).

Hillary says that they don’t really know gender but that the person looking after them should not think that without asking them. This is really bad when the researcher has no knowledge of gender either! When researchers speak for Autistic people they tell everyone that they know more about us than we do, treating us like silly children. This ignores the double empathy idea, written by Damien Milton, which says that non-Autistic people often don’t understand Autistic people. Researchers who think Autistic people don’t understand gender are ignoring that gender is not just binary (man and woman) it is a spectrum itself (there are lots of different ways to have, or not, have a gender).

The pathology paradigm (an idea which makes us look awful and sick) stops other interesting work from happening like research on Autistic joy and pride. A change of research ideas is needed to improve our understanding of autism, showing Autistic people as we truly are. Thankfully there are more people doing ‘double rainbow’ work which supports awareness and acceptance of Autistic and queer people. This uses a neurodiversity paradigm (an idea which shows us as an important part of the world) which shows that Autistic people do not get the same support as other people just because our brains are different.

Thankfully, the neurodiversity paradigm (an idea which shows us as an important part of the world) is being used in new research. Transgender Autistic research sometimes uses this idea, fighting bad ideas about trans Autistic people, supporting disability and trans rights. Research by allies (people who support transgender Autistic people) can make healthcare and education easier for us.

My study

Sharing real-life stories allowed participants to become self-advocates (people who stand up for themselves), showing others that their experiences are a valuable part of human diversity (the differences across all humans). This work on “double rainbow” stories could strengthen research ideas, making suggestions for more appropriate and inclusive practice (meaning more people can get involved). As one Autistic non-binary researcher recommends:

The world needs to hear more from people who actually live at the intersection of autism and gender variant… [as] nothing can replace the wisdom and knowing that comes from lived experience (Sparrow, 2020, p.18).

Sparrow (in 2020) suggested that research would benefit from the voices of trans Autistic people as the experts of our own experiences. This view is also seen in current Autistic research which says that there is something inappropriate about ‘needing others’ to act as an authority on Autistic lives. This work suggests that professionals use the suggestions of trans Autistic people to strengthen their support services, saying that no decisions should be made without the active participation of Disabled people. This research idea is based on the motto of the disability rights movement ‘nothing about us without us’, first written by Charlton in 2000.

Using the neurodiversity paradigm (an idea which shows us as an important part of the world) allowed me to focus on the individual experiences. Allowing me to explore how Autistic gender diverse people can take part in work on our lived experiences, allowing us to add to story-based research led by gender and neuro divergent researchers.

This study was important to me as a queer, non-binary, Autistic person, and as a youth worker who works with gender divergent Autistic young people. I hypothesised (made a good guess) that participants would see themselves in relation to the neurodiversity paradigm (as whole human beings with a lot of value) and that their experiences as Autistic people was both good, bad and in-between. I also thought that participants would have good suggestions for future which centre around the ideal of ‘nothing about us without us.’

I will use identity first language (Autistic person) because all of the participants use that. I have capitalised ‘Autistic’ to show how it is an important identity. I have used the term transgender and trans to mean everyone who does not agree with the sex and gender that doctors said they were when they were born.

Methods – what I did

Talking to people about their stories allowed me to know about their personal experiences and then connect that to bigger things going on in the world. Using a narrative method (story telling) meant we could look at big life events in lots of detail. Sharing these stories showed me the importance of listening to people’s feedback and how that could be used to make research better. These stories are important, as transfeminine actress Christine Jorgensen explains:

[I hope that] a clear and honest delineation of my life may help to a greater understanding of boys and girls who grow up knowing they will not fit into the patterns of life that is expected of them: of the men and women who struggle to adjust to sex roles unsuited to them: and the intrepid ones, who like myself, must take drastic steps to remedy what they find intolerable (Jorgensen, 1967, p. 16.).

Here, Jorgensen said that it was important to share her story so that other people could understand themselves better and so that cisgender people could understand transgender people better. Jorgenson’s story was one of the first to talk about medical and social transition (having surgery and hormones and changing her name and how she dressed). This is still an important story in transgender history. Allowing participants to focus on the areas that were important to them gave me lots of important information about their lives.

My lived experience, as a non-binary Autistic person, allowed participants to tell me more as they felt I could be trusted and would understand better (I will talk about this more in the “discussion” section). Although this research is not about me, my experiences has affected the way I think about these stories.

Data collection and analysis (story collection and sorting)

I spoke to 8 (eight) people on one-to-one interviews on Zoom. I asked participants questions and then asked more questions based on what they told me, like a typical talk between two people. I did not focus on the identities of these participants – them being trans and Autistic – I let them talk about what they wanted to.

Participants told me their age, pronouns (like She/her, they/ them, he/him) and ethnicity, which allowed me to understand more about their stories. Using Zoom meant that I could talk to people from across the World, including South Africa, Australia and the USA.

Participants were given the choice to fill in the interview question sheets by themselves, which they could ask me for help with. The question sheets had suggested word counts and reminders to help participants understand and answer the questions. The questions were the same for all written interview participants. The 5 (five) participants who chose to do a written interview did so because they lived in time zones which made meeting online difficult, felt anxious around using Zoom or because they preferred writing to talking.

Participants (the people I spoke to)

I spoke to 13 (thirteen) participants who were Autistic, either formally or self-diagnosed, and transgender and / or non-binary. It was important to talk to people who self-diagnosed (knew they were Autistic without a doctor telling them) because not everyone can access these doctors, and they may not want to. I spoke to people between the age of 20 and 50 (twenty and fifty) who were trans-masculine, trans-feminine and non-binary (although many participants held lots of different gender identities too).

I recruited participants through private transgender Autistic Facebook groups. I have been part of these groups for a while, so this was easy for me to do. Participants were recruited from across the world (UK, USA, South Africa, France, Australia and China) and needed to be able to communicate in English via text or speech.

After the interviews I wrote up all the stories and then compared them all.

Participant information

No.	Pseudonym (Fake name to keep their identity private)	Where they live	Age	Ethnicity	Gender	Pronouns
1	Sam	UK	27	White	Agender non-binary	They / them
2	Jay	USA	31	White	Agender non-binary	They / them
3	Derek	UK	20	White	Trans man / man	He / him
4	Scott	S. Africa	31	Dual heritage	Trans man / male	He / him
5	Micky	USA	25	White	Trans masculine non-binary	They / them
6	Kim	UK	50	White	Non-binary	She / her
7	Robin	USA	26	White	Non-binary trans masculine	They / him
8	Toby	UK	33	White	Non-binary	They / them
9	David	USA	21	White	Trans man	He / him
10	Anthony	Australia	33	White	Trans male	He / him
11	Greg	USA	25	White	Trans man	He / him
12	Anette	France	27	White	Non-binary, queer, agender	Elle / she / they
13	Ronnie	China	34	Chinese	Non-binary	They / them

Figure 1: Participant demographics (this is the name of this box of information)

Findings and discussion – what I found and what it may mean

After comparing all the answers, I found five big themes (topics) across the stories. The themes were mental health and trauma, relationships and socialising, aspirations and dreams, work and education and advice participants made for future research.

Theme 1: Mental health and trauma (emotional shock)

Lots of Autistic people, transgender people and people who are both Autistic and trans have mental health issues. Most research looks at gender dysphoria, a condition which harmfully impacts the person’s everyday life. Looking at gender dysphoria only ignores gender divergent people who do not feel this, or not enough for it to be seen by others. Looking at people who go to gender affirming healthcare (doctors to help with social and medical transition) ignores people who cannot access healthcare because they have a formal diagnosis of autism. As one participant, Derek, a 20-year-old trans man from the UK, explained:

Whilst going through any medical or therapeutic sessions as a diagnosed Autistic person sometimes it can take longer. I’ve read that and I’ve had people who are formally diagnosed say ‘yeah, that’s correct, it has taken me longer to be able to access the correct healthcare and go through everything’ – that their process takes longer because they are Neurodivergent.

Derek talked about a friend who could not access gender affirming healthcare because they had a formal diagnosis of autism. Their gender divergence was doubted because of the stigma (bad ideas) around autism, including that Autistic people cannot understand gender. The work which is used to diagnose autism carries on this idea that we are lacking, that we are not very good at anything, and we find everything difficult. Looking at autism through the pathology paradigm (an idea which makes us look awful and sick) means we are more likely to suffer abuse and discrimination (nastiness because we are different) from medical people. Due to these bad ideas about us, many Autistic people cannot gain help, so many of us do not try to access gender affirming healthcare. Gatekeeping (people or things which make it harder to get care) can make our mental health worse due to lots of unneeded paperwork and overwhelming care conditions. As Scott, a 31-year-old man from South Africa, reflected:

Because I’m Autistic and I’m in a building with literally thousands of other people, because our hospitals are currently very crowded, and have always been very crowded, so I’m getting overstimulated, I’m getting overwhelmed, my anxiety is shooting through the roof.

Scott describes the places in which he can find help as places which add to his discomfort and overwhelm. Similar was said by Greg, a 25-year-old trans man from the USA:

A potential issue with getting top surgery is that hospitals are very sensory-overwhelming places and that has made me put off even looking into the process. I do not do phone calls well, and so figuring everything out with insurance and surgeons, and then being in a hospital for even a day feels like I may as well be climbing a mountain. It’s a bit much for me to handle by myself, to say the least.

Greg described the process for accessing top surgery as overwhelming. He said that he would have to make lots of phone calls, which he finds very difficult and that the medical insurance (the people who would pay for his care) is hard to understand. Going through gender affirming healthcare takes a lot of energy – patients need to go to a lot of doctors, organise their paper, make lots of phone calls and emails, and all about something really personal. Medical insurance (as Greg said) is also really difficult to understand and use. All of this meant that, at the time of interview, Greg had not started this part of his medical transition. Greg and Scott explained that accessing gender affirming care had negatively affected their mental health, this was similar for them despite living over 8,000 miles apart! This stress on mental health can cause some help-seekers to start their own treatments without medical assistance, as Derek, a 20-year-old trans man from the UK, explains:

I know someone who is Neurodivergent and a couple years older than me and is finding their own hormones and doing it completely on their own, rather than doing it legally, so to speak. They’re doing it themselves because they weren’t able to access the help that they needed, and it got to a crisis point.

Derek’s friend had reached ‘crisis point’ (a very bad place) and decided to start hormone replacement therapy without medical assistance to make sure their mental health did not get worse. This is worrying because without the help of doctors and regular check-ups, people are putting their physical health at risk. The long waiting lists and difficult to get healthcare is making trans Autistic between their mental and physical health. A formal or self-diagnosis of autism should not stop people from getting gender affirming support. Under the neurodiversity paradigm (the idea that we are important parts of humankind) trans Autistic people would be told that their neurology (brain and nervous system) does not stop them from getting gender affirmative care.

Participants also spoke about their long-term trauma (emotional shock) responses to abuse, neglect and toxic relationships. I did not want to focus on these situations so that I could protect the mental well-being (happiness) of participants. One participant, Micky, a 25-year-old trans masculine non-binary person from the USA, spoke about going to a friend’s house for Thanksgiving as they no longer felt comfortable going to their family home. They said they had experienced “some abuse and neglect issues” which meant they no longer spent time with most of their family apart from their younger brother. Toby, a 33-year-old non-binary person from the UK, also spoke about their experience with emotional abuse, saying: “I can be quite easily manipulated and end up with people who are quite toxic. I can’t tell that they’re toxic.” Ronnie, a 34-year-old non-binary person from China, also shared that some of the people in their life were “too indoctrinated into their religion to look past the intolerance it teaches them.” – this meant that their family members were too blinded by their religion to see and love the person in front of them. Arguments and breakdowns within family around gender diversity is related to poor mental health outcomes.

Sadly, Autistic people are seen to be at greater risk of experiencing abuse and other traumatic events due to our thinking, social, behavioural and communication. Research lead by Rumball in 2020 found that 83 / 100 (eighty-three out of one hundred) of their Autistic participants had gone through many traumas (emotional shocks) including natural disasters (like tornadoes and tsunamis), physical and sexual attacks, and life-threatening illness or injury. This trauma may be the reason for autoimmune conditions (conditions where the body gets confused and attacks itself or doesn’t protect from illness) and long-term illnesses in gender divergent Autistic people. As Sam, a 27-year-old agender person from the UK, explores:

And then also the amount of trauma we go through generally, and trauma tends to be something they ask you with a lot of the conditions I have, if you remember going through a certain kind of trauma around the time you notice the onset of these conditions, because they think the motion of trauma often can actually be a trigger for a lot of physical autoimmune conditions. I was asked it for fibro, I was asked if for Chron’s, I was asked it for takayasus. I can say “yes” to all of those. So, I don’t know whether it’s just coincidence or what?

Sam explained that they have been asked about trauma during diagnoses as they were seen as maybe starting their autoimmune conditions – in which the immune system becomes confused and attacks itself. Sam could not tell if their trauma caused their autoimmune conditions or if they just happened to occur around the same time. I did not probe Sam for further details to protect their current mental health, however many types of traumas have been linked with auto immune conditions including childhood abuse and neglect. The risk goes up the more it happens, the longer the trauma lasts and if is starts in the early years of life. Sam may have been asked about their experiences of trauma in relation to their fibromyalgia (a chronic pain condition) as 25-50% (twenty to fifty per cent) of patients with fibromyalgia report a big traumatic incident before their fibromyalgia happens.

Sam explained how they used substances (alcohol and smoking) in the past to dull their chronic pain. They spoke about their relationship with binge drinking and smoking and how this was connected to their Autistic differences and trauma:

So, whilst I really enjoyed going out and dancing with my friends and maybe getting a bit drunk. I used to get so drunk because I was in physical pain from my chronic conditions, but also from like the sensory ‘bleurgh’ awfulness that is just going out clubbing as an Autistic […] I used to smoke as well for ten years I smoked because it was like my crutch of how to have, like a socially acceptable ‘out’ of a sensory break […] it’s socially acceptable to get really f**king drunk, or smoke a lot, and go out for fag breaks all the time, instead of being like ‘Hey, I need a sensory break – this is too much.’

Sam explained how their substance use was related to their Autistic and Disabled differences; they used alcohol to calm down sensory overload and chronic pain and used outside smoking breaks to escape overwhelming nightclubs. They said that it was more socially acceptable to be really drunk than to ask for a sensory break. Many LGBTQIA+ venues and nightclubs can be inaccessible to Autistic people who experience sensory overload from noise, heat, lights and crowds. MacLean, in 2020, spoke about access issues to queer spaces:

After that [coming out] came the well-intentioned offers to take me to a gay club and prides across the country – after all being out and proud was something to be celebrated. However, being on the autism spectrum means I have often found clubs overstimulating. I’ll often suffer from what I call a ‘social hangover’ from being overwhelmed. This began to make me feel really isolated, as pride events and the club scene are often presented as the only ways to find community.

MacLean and the participants in my study, raised some interesting points about ableism (being nasty to disabled people or not allowing us to join in) within queer spaces, including sensorially overwhelming nightclubs, the lack of alcohol-free venues and the use of strobe / flickering lighting. Not being able to go to Queer spaces may not help trans Autistic people’s mental health because we may experience isolation and loneliness.

Theme 2: Relationships and socializing

Many of the participants spoke about the love they felt in their close relationships, especially those they had with other Autistic people (Kim, Anthony, Toby and Derek). Autistic adults communicate with other Autistic people more easily and our needs and interests can be supported through these connections. Relationships between trans Autistic people can include queer platonic relationships and chosen family, often created in place of biological families. Toby (a 33-year-old non-binary person from the UK) spoke about their connections with others:

So, I think in terms of family [my aspirations] would be to further develop my chosen family so that I feel surrounded by I call it like – all my friends use it and I think it’s like a sociological phrase – like ‘warm bath’ people […] And so yeah, I think that to allow myself to be seen more fully by these people and to establish my own unit. And I think just feeling okay with not having a typical family structure is something I really want to work towards because I’m constantly having to accept that I don’t meet societal standards in basically all the ways possible I could not meet them, I don’t meet them [chuckles]. And I still struggle with that. So, I think for me, it’s about accepting that this is how my family structure looks […] because like friends are the centre of my like relational world in a lot of ways and you know like my family don’t necessarily get that or recognise it or understand that. So yeah, I think just leaning into that and being okay with that for myself […] Yeah, outside recognition is an issue for me though.

Toby talked about the connections they have made with others and said they have started to create their own chosen family of ‘warm bath’ people in which they can find comfort and warmth. Queer individuals often create family outside of their biological (blood) families because they are thrown out of their family home. Toby wanted a different family structure, but they were still working towards accepting this. They suggested that one of the biggest troubles was understanding from people outside of their chosen family. Chosen families are not always there to replace biological families, they are simply another way of sharing understanding and love. When talking of their familial hopes, Toby explained:

I find like, with like relationship anarchy stuff and polyamorous descriptors quite helpful things like describing friends as anchor partners because I do consider one friend in particular like a life partner even though it’s a platonic relationship, a platonic connection […] I’ve got polyamorous friends where some of the language they use really resonates with me. And it kind of gives me more ways of verbalising how I experience relationships. But it’s something I mean if I could have romantic relationships without losing my mind [chuckles] I’d probably explore it but yeah, it’s definitely something that makes a lot of sense to me, as a way of existing with other people.

Toby said that they related to polyamorous relationship styles (relationships which have more people than two partners) despite struggling with their mental health when in romantic partnerships. Toby had strong relationships with their friends and felt that they did not experience friendship in the same way most others do. They suggested that they would like to be part of a queer platonic polyamorous relationship and they wished for that to be respected by others. Queer platonic and / or polyamorous relationships can be a firm basis. Sam (a 27-year-old, agender person from the UK) spoke on their aspiration to live communally:

I would like a commune, for all of my sick, queer and Disabled friends […] My friends are all over the country all over the world, all dealing with very similar issues to me, whether it’s health care issues, or funding or living space or care, and work and stuff like that it just feels and sounds much better if we could all just move in together and help each other doing the things that someone else can’t do but you can do.

Sam explained the difficulties that they and their friends experienced across the UK and the World. They said they aspired to create a community living place in which members could share resources, knowledge and skills. Trans and non-binary Autistic people could benefit from living communally, as we could be protected from the loneliness, abuse and harm which is still common in many of our lives. Community living could also protect us from inaccessible housing and healthcare, as well as creating more supportive family structures. As Sam went on to explain:

Like the only reason I would maybe even have children of my own is if I had like big community of people to help. Like I grew up with like a bunch of my mum’s family, also partaking in care. So, like I had two great grandparents, two grandparents on my mums side, and my mom. So, like I was taken care of by basically five different adults. I feel like that’s good and beneficial for not only like parents but also the kids involved as well. I also read a book that had I think a polyamorous family that was sort of talking about how having more than just one or two parents is actually really helpful, just for everybody involved. And I was like ‘hmm’ that opened my eyes.

Sam recognised their thoughts on living in a polycule (in a family with several partners) so they could support each other and help raise any children they had. They spoke about coming from a large family and how that had benefited them as a child. Sam and Toby seemed to share similar familial hopes, they both were interested in neuroqueer-ing the typical family by living a-romantically and asexually with several neurodivergent partners. Sam frequently spoke about their friends, most of which were chronically ill, Disabled and / or Neurodivergent. Creating friendships with other Disabled Autistic people was a common theme amongst participants:

People I have fixations on do tend to be Neurodivergent that happened even before I had my diagnosis where there would just be one person in the room that I would be very interested in immediately. And strangely enough, often they were also Autistic. I think just kind of recognising that sameness and being quite drawn to that because, like in general in my life have been quite alienated.

I am fortunate to have an excellent group of friends who I met in my first year of university sixteen years ago. While we didn’t realise it at the time, it turns out we’re all Neurodivergent, and two out of the four are queer.

A lot of my trans friends are also Autistic or otherwise Neurodivergent, and they started kind of gently poking me like “here are these surveys”, and like “we have these things in common and isn’t that interesting?” [chuckles] to the point where I self-diagnosed, eventually got a formal diagnosis as well so.

Anthony, Toby and Robin explained being naturally drawn to other Neurodivergent people. Autistic people often benefit from relationships in which our atypical ways of being and communicating are accepted and appreciated. We can discover lots of joy in our Autistic communities, finding support and safety from similar others. Kim, a 50-year-old non-binary person from the UK, spoke avidly about how they made connections at a yearly Autistic learning and social space:

[I’ve made] some different friends from different places like I’ve meet quite a few friends at Autscape the Autistic conference […] Yeah, So I’ve been – well I’ve been 3 times in person and 2 times online. So, I’ve been 5 times altogether now, made quite a few friends there. I’m also in a theatre group which is for Autistic people and others, we’re not all Autistic, but the aim of our theatre group is to educate people about autism and do various plays and I’ve been involved in that for three years now. Obviously, we couldn’t do much round Covid, but we have online chats and stuff during Covid. […] But before that I can’t say I did really have many friends, especially when I was a younger person, so for many years in my teens, I didn’t have any friends at all, or really at Uni either. I had a few acquaintances at Uni but no one that I kept in touch with. So, yeah it has been hard.

Kim has created relationships and connections with other Autistic people, including her wife (“my wife is also non-binary and Autistic”) and attends Autistic and Neurodivergent specific groups. She described having issues with making and keeping relationships before she realised she was Autistic – she was diagnosed in her early forties – but now frequently accesses Autistic-only groups and spaces, making it easier for her to connect with others. Similar was experienced by Ronnie, a 34-year-old non-binary person from China:

I have to turn to strangers online in order to find the support that I need and am in Facebook groups for both Autistic and trans people. It’s great that I can find a community of people like myself and know that I’m not alone.

Being in spaces which support Autistic people’s needs can help create feelings of belonging which often does not exist in inaccessible, non-Autistic environments. Kim and Ronnie shared that they both had very few friends before joining these groups. Unfortunately, it is common for Autistic trans people to feel isolated due to access issues to events and groups, including ableism and transphobia (hatred towards disabled people and to transgender people). Fortunately, spaces such as Autscape and social media groups online, appreciate that many of their members are LGBTQIA+ and have created spaces specifically for queer Autistic people, as Kim went on to explain:

There is a lot of overlap between the two: a lot of trans people are Autistic and a lot of Autistic people are non-cisgendered and so many people don’t know. I mean I didn’t even know that until I went to Autscape and started finding out about this thing. And at Autscape that we had an LGBT meeting there were about 200 people in the whole of Autscape, and something like 60 or 70 people came to the LGBT meeting. So, that is how many of us identified as non-straight and non-cisgender and that was only the ones who came to the meeting. There were probably others who didn’t come to the meeting. Yeah, there is a massive proportion of Autistic people that do identify that way. [At the meeting] we just basically went round and the people who felt comfortable said how they identified in their sexuality and gender. One or two people just told their personal experiences. So, it was just like a support group, but it felt amazing that there were so many of us in that room at that meeting.

Kim talked about the over-representation of Autistic people within the LGBTQIA+ community including how she was unaware of the significant overlap before going to Autscape. Research on this area has found that Autistic adults are 8 times more likely to identify as non-heterosexual than their non-Autistic peers. In one study, Autistic men were 3.5 times more likely to identify as bisexual than non-Autistic men. Similarly, 11.4% of Autistic adults said that they wished to be a different gender than the one they were assigned at birth, compared with just 5% of the general population. Some participants spoke about the overlap of Autistic and queer identity, including Micky (a 25-year-old, trans masculine non-binary person, from the USA) who said “being trans and Autistic is a very common thing […] there’s a significantly higher rate of trans Autistic people.” Kim appeared pleased about attending the LGBTQIA+ group at Autscape and has kept in contact with some of the people she met there.

Outside of Autistic and trans specific spaces participants explained their difficulties in socialising in group settings. Some spoke of experiencing social anxiety especially when meeting new people, as well as the difficulty of creating and maintaining new relationships:

I was a shy kid, and I am a very quiet and reserved adult with a lot of social anxiety. This never stopped me from making friends, especially when I pushed myself to interact with new people, but I do not have a great history of keeping friends. My favorite hobbies are things I can do by myself (reading, writing, playing Minecraft without people messing up my building plans), so when it became a decision between my pastimes or hanging out with people, I preferred to stay home.

Greg, 25, trans man, USA.

I’ve been sociable in the aspect that I can make friends, but I can’t maintain friendships. I find it very difficult, and I’ve always had different interests as the other kids you know, currently I’m really into taxidermy and bones and stuff like that. And I have been for many, many years and I’ve just very, very few people that have the same interests with me. People wanted to play kiss chase in the playground, and I was climbing trees and finding books and stuff, and being in my own company, and I was happy in my own company, growing up.

Derek, 20, trans man, UK.

I have a wide range of hobbies. Mostly ones that I can practice by myself, like astrophysics, drawing, music or arts. When not in a pandemic period, I like to go to concerts and museums, but often by myself. I find it hard to cope with what I see and who I am with at the same time. On the other hand, I love meeting new people, it’s just not really easy.

Anette, 27, non-binary queer agender, France.

Derek, Greg and Anette all spoke about how difficult it was to make friends due to their different social and communication needs. Derek reflected that he had very specific interests which others don’t usually have. All three participants spoke about choosing their hobbies, interests and own company over that of socialising in large groups. They all appeared interested in connecting with others but would prefer to do it one-to-one, online or around their specific interests. Toby, a 33 non-binary person from the UK, also spoke about their social anxiety:

I struggle socially in any context that isn’t one-to-one, so I grew up forcing myself to exist and interact in group situations. And as I’ve gotten older, I’ve just given myself more and more permission not to do that because I do experience like situational mutism in groups. So, I’ve had things happen, like, trying to talk and like someone asked me a question in a group and I’m, like, so overwhelmed by the setup that I can’t actually say anything. But it is. Yeah, quite humiliating. I’ve had that happen a couple of times. So, as I’m older, I’m just more like ‘That’s not for you. That’s fine.’ And I even struggled to go to like Autistic groups places, because I think some of its trauma, but just having had so many negative experiences in groups where I’ve just not been able to talk. So even though I’m aware that it could be quite different amongst Autistic people, and still have that kind of reticence.

Toby spoke about how they feel uncomfortable in all social groups, whether they were socialising with other Autistic people or not. They said that this was based in trauma around going mute (non-speaking) in previous group situations. They said they felt embarrassed when losing their ability to speak and preferred one-on-one social situations. This may also explain why Toby wanted the interview questions beforehand, as they were able to write down their answers and read them out loud when they needed to. It is this form of self-knowledge and adjustment which formed our conversations around future ambitions.

Theme 3: Hopes and ambitions and their possible access issues.

All participants shared their future ambitions which included creating a chosen family and raising children (Derek and Micky) furthering their medical transition (Anthony, David and Micky) and finding more suitable work. There were obstacles to these plans, namely inaccessibility of gender identity healthcare, lack of support from medical professionals and lack of work accommodations. Long term relationships, including communal living and creating a chosen family, were an aspiration of Derek, Micky and Toby. Derek (a 20-year-old trans man from the UK) showed an interest in adopting or fostering children:

I’d quite like to have kids. It’s something that I had to really think about before medically transitioning due to the fertility issues that come along with testosterone. Personally, I don’t want biological kids, I don’t have any interest of using what I have to create life and stuff. It’s just not something I’m interested in, and it never really has been […] My best friend is currently pregnant and due in April, I’m very excited for her to have her baby, so I can hang out with the baby, and then give the baby back. And I’d be perfectly happy to do that but if it came around that you know that there was a kid that needed a home, I’d be perfectly happy to take them in. I’ll just have kids, but I’d rather adopt and go for the process that way than have biological children

Derek spoke about choices around fertility provisions, including whether to freeze his eggs, due to the potential infertility issues which can occur during hormone replacement therapy (HRT). He explained that he may adopt or foster children in the future but was not interested in carrying or birthing a child. Fertility-preservation is a major decision for transgender and non-binary people who undergo HRT and gender affirming surgeries. Currently, there is a no data on testosterone therapy on future fertility, therefore a best time to pursue fertility perseveration has not yet been proven. The data on live-birth rates for preserved eggs is also minimal and the process for collecting eggs is unpleasant and may cause gender dysphoria and distress to patients.

Micky, a 25-year-old trans masculine non-binary person from the USA, showed similar interest in creating a non-biological family: “the main thing I know is when I’m older is I would like to be able to foster and adopt kids”. At the time of interview Micky had been on HRT for 3 months, he said that he would like to be on testosterone for another two years before he makes any decisions on additional gender affirming care, including fertility preservation. Some participants wanted to have children, and some were not. These family ambitions, or lack of, are similar to those in other research studies. Most of the current participants were happily living in non-typical families including living alone, living with animals or living with a partner and their ‘fur baby’ (their cat).

Some participants spoke about their gender affirming healthcare goals, including “top surgery” (Anthony, 33 trans male, Australia; Greg, 25, trans man, USA) and “transitioning almost fully with the exception of bottom surgery” (David, 21, trans man, USA). Many participants described gatekeeping (people blocking or slowing progress) around gender affirming care due to their autism diagnoses:

There is so much gatekeeping when it comes to being officially diagnosed as Autistic, and in medically transitioning, and I’ve found that my psych for one doesn’t feel comfortable assisting with the other, meaning I have to find a new psych, which means new ‘intro’ appointments that are several hundred dollars a session in which I have to convince them that I am willing and able to medically transition.

Anthony, 33, trans male, Australia.

Yeah, I would say they use it [an autism diagnosis] as a way to invalidate gender divergence, just because like there’s, it’s kind of like with trans people. There’s this infantilization of “Oh, you don’t know what you’re actually talking about.” […] And I’m just like, “have you actually bothered to know what that is? And also, do you live in my head?” So yeah, I think like it tends to be because they’re viewed in such a like, as children essentially then it becomes – if you’re the kind of person who’s going to do it – it becomes easier to invalidate another level of self-identification.

Micky, 25, trans masculine non-binary, USA.

Anthony and Micky described the issues of finding medical professionals who will take them seriously as Autistic trans men and non-binary people. Professionals often assume that Autistic people are unable to understand gender. Some research on trans Autistic occurrence rates suggests that gender diversity is related to Autistic ‘social deficits’, based on clinical definitions which use awful language to describe Autistic characteristics.

Many Autistic people are left unsupported simply due to our neurology. HRT and other medical interventions are often seen as unnecessary or dismissed as an ‘obsessive’ Autistic trait. Participants who were taking part in gender affirming healthcare gave suggestions on how to improve access:

I think, in terms of health care that more doctors and nurses [should] actually understand how things intertwine, that they actually understand neurodiversity and how to interact with Neurodivergent people, that would be great. – Scott, 31, man, South Africa.

Yeah, so in terms of healthcare, I think my aspirations are just to be listened to and taken seriously. And have my gender identity recognised, I guess. – Toby, 33, non-binary, UK.

Despite living in different countries, Scott and Toby made similar suggestions to improve professional knowledge around being gender divergent and Autistic. Unfortunately, at present, patients must self-advocate for both their autism diagnosis and gender identity healthcare due to a lack of specific rules for professional. Participants from previous studies, suggest that general practitioners (GPs) need to improving their knowledge on the trans Autistic experiences as well as how to access gender identity healthcare.

Crossing gender healthcare is difficult and demanding, patients need to be able to plan and organise various appointments, keep up with emails and phone calls, around an issue which is highly emotional. This can be more difficult for Autistic people who often have different ways of organising and understanding time and information, as well as controlling and communicating our emotions. Private healthcare is perhaps more difficult to work within. Two participants spoke of the issues with private healthcare in the USA, suggesting it would be better if everyone could access gender healthcare regardless of financial status:

I would like everyone in the U.S to have health insurance like universal health insurance. So, I’d love to bully the healthcare system to do that.

Robin, 26, non-binary trans masculine, USA.

My dreams right now are to get top surgery (which I have been putting off because it’s expensive and hospitals are scary) and to be financially stable.

Greg, 25, trans man, USA.

Despite living outside of the USA, Anthony (a 33-year-old trans man from Australia) had similar issues with funding different therapy sessions due to uniformed psychiatric professionals:

It’s a difficult crossover, because services that are targeted towards Autistic people aren’t necessarily trans-friendly and vice versa. I’m always nervous when approaching doctors etc because I never know where each one will fall. The biggest issue, though, relates to money […] There is so much gatekeeping when it comes to being officially diagnosed as Autistic, and in medically transitioning, and I’ve found that my psych for one doesn’t feel comfortable assisting with the other, meaning I have to find a new psych, which means new ‘intro’ appointments that are several hundred dollars a session in which I have to convince them that I am willing and able to medically transition.

Similar issues were experienced by Greg, a 25-year-old trans man from the USA:

There was this one counsellor who referred me to this psychiatrist. I originally asked her for a letter of readiness for top surgery, and he came back next week and said, “I’ll write it for you, but I think you’ll be more comfortable seeing someone else” and then we talked about “okay, you help me find this person!”. And later that week, emailed me a recommendation for someone who met none of the requirements and would be comfortable with me.

These professionals stopped caring for their patients due to their hatred towards transgender folks. Greg’s counsellor had referred him to another practitioner and although they were meant well they were not helpful. Even when referrals go well they add pointless financial and emotional pressure to Autistic trans and non-binary patients. Unfortunately, many transgender Autistic people experience professional ignorance, often after having been on long waiting lists. Problems with waiting times are an issue across the UK, USA and Australia. In 2021, The Gender Identity Development Service in the UK had a waiting list of 4,600 people, with a wait time of at least two years for the first appointment.

Participants experienced some form of gatekeeping – from autism diagnosis due to being trans, or gender affirming healthcare due to being Autistic. Participants spoke about the lack of professional knowledge, lack of funding, inaccessible paperwork and transphobia and ableism. Unfortunately, these access issues are unlikely to improve whilst transgender healthcare services continue to experience higher global demand. Gender identity healthcare shall continue to be inaccessible as waiting lists grow longer and treatments become more expensive.

Theme 4: Work and education

Autistic people and transgender people have are far less likely to be employed (in work) than neurotypical and cisgender people. There is no information on the rates of unemployment for transgender Autistic people.

Workplaces can be inaccessible for many reasons including; unclear work rules, overwhelming work places, bullying, and feeling unsafe about ‘coming out’ as trans and Autistic. All participants spoke about support issues in their place of work:

Work is much harder. Without a diagnosis, I don’t say anything about autism, and often end up with shutdown at the end of the day.

Anette, 27, non-binary queer agender, France.

I have only mentioned my autism in passing at work because while it is not explicit, I get the feeling that there is too much ableism going around. My boss is great, and I love being there, but I have watched them make fun of ND [Neurodivergent] people. I also know a co-worker is a Trump supporter and while she has been nothing but nice to me, it makes me feel unsafe to fully come out.

Ronnie, 34, non-binary, China.

Some of them [my students] know I’m gay but I’m not out as Autistic, because I don’t know how that would go down. Not quite sure if it would go down very well and I don’t require any additional support.

Kim, 50, non-binary, UK.

So, I did tell [my workplace tutor] that I was Autistic at the point that I got my diagnosis, and she was like “oh, this is an interesting career choice for an Autistic person.” Yeah. And that was the start of like, just a whole avalanche of like different kinds of ableism after that. So, I shouldn’t have told them really, but I didn’t realise that that was such a bad idea, or that I didn’t realise that I should at least be cautious and think about how that person might receive that information and particularly in a counselling training setting.

Toby, 33, non-binary, UK.

Anette explained how she experienced shutdowns – an extreme case of sluggishness – whilst at work due to being overwhelmed all the time. Anette felt that their needs would not be taken seriously at work because they are not diagnosed. Ronnie has told their work colleagues that they are Autistic but was uncomfortable about coming out as non-binary due to the political opinions of other staff. They have overheard ableist jokes and comments made about Neurodivergent people which made them feel unsafe about asking for support. Kim felt comfortable coming out about their sexuality at work but did not feel like it was ‘worth’ coming out as Autistic. She believed that parents of clients would find her being Autistic too difficult to understand. Kim also said that being self-employed, she was able to work around her own needs and would not gain anything from being openly Autistic. Toby was excited after their autism diagnosis, as they felt like they finally knew themselves, but their tutor was less than supportive. Toby could not believe how someone working in counselling would be so judgmental and ableist. Similar issues with ableism have stopped Micky (a 25-year-old trans masculine non-binary person from the USA) from being openly Autistic at work:

So, I’m out as trans at work, but I’m not out as Autistic because just with the amount of stuff that like I’ve had to deal with. […] And because autism is less visible and when it is visible, it is far less informed and there’s far less incentive for people to be informed about it right now as that would affect like how keep certain managers at my job would approach me and it doesn’t feel worth it to be out about that. […] As a trans person, there’s more institutional support but presently as a Neurodivergent person, it is highly dependent on your manager, and there’s less of that institutional stuff I think mainly because like it is an area people aren’t educated about and it’s one that a lot of people find to be a grey area and because people have very different needs there whereas like with trans people, it’s like “okay, everyone can change their names” so it’s definitely easier to be – easier as a relative term – to be out as trans than to be out as Autistic.

Micky said how they felt much more protected as a transgender person in their workplace. They said that working at a large company – with over 5,000 staff members – made the processes for trans inclusion easier for the company to achieve (such as changing names and pronouns). Micky said that being openly Autistic was more complicated as there was clear way to support all Autistic people at work. Unfortunately, many employers lack knowledge of Autistic experience and therefore do not adjust the working environment or expectations for Autistic workers. This, coupled with workplace bullying, inflexibility in work hours and lack of clear communication, means that many Autistic people are unemployed, or underemployed in job roles which do not match our capabilities . It is surprising that Kim and Micky felt more comfortable being open about their LGBTQI+ identities than their neurology. Being open about either identity at work can put transgender Autistic people at risk of harm, as expressed by MacLean, a transgender Autistic person:

Navigating the world of work as someone who is both neuro diverse and LGBT is complex… I was even told by one employer that if I came out, they would have to let me go because they thought it would negatively affect their business. Sadly, there is still so much education needed around what being trans means – that we have always existed. Luckily, I went on to find a job that accepted me and the longer I worked the more comfortable I became with myself. My colleagues proved to be amazing allies and in 2017 I made the jump to finally reveal that I am transgender and want to be known as Roan.

MacLean explained that he was threatened with being fired if he came out as transgender as his employers suggested that having an openly trans member of staff would ‘negatively’ affect their business. MacLean was fortunate enough to find another job in which his gender identity was respected by his employer and work colleagues. Regrettably, many gender divergent Autistic people struggle with finding and keeping employment due to unknowledgeable and unaccommodating employers. As Toby, a 33-year-old non-binary person from the UK, explains:

So, I’ve got quite a transient relationship to jobs in general I tend to work in like two

yearly increments in a particular place. And to be honest, I get really burnt out every couple of years and discontent with the work culture.

Toby spoke about unhappiness with workplaces and work colleagues which meant they changed their jobs frequently. Toby was able to move between different workplaces to protect their mental health. Not all Autistic people can do this as we often prefer consistent routines and expectations. Black Indigenous People of Colour, non-speaking or learning-Disabled Autistic people may not experience changing work the same way, especially with the lack of employment support for those with more complex needs.

Unsupported sensory and social communication differences were faced by some of the participants within the workplace:

I have struggled very much in the employment market, as the jobs I’m most qualified for seem to be the ones that are least suited to me in terms of sensory needs etc. – Anthony, 33, trans male, Australia.

I intended to be a classroom teacher. I trained as a classroom teacher in my twenties, and I went for loads of interviews, and I never got past an interview, they always picked someone else. And I think that I know now that that’s because I’m Autistic and it’s the way I communicate and so yeah it just didn’t work out being a classroom teacher. But actually, it worked out for the best because I’m much happier teaching one-to-one.

Kim, 50, non-binary, UK.

It’s very hard to find a job like a flight attendant because I lack some social skills that could be important.

David, 21, trans man, USA.

Jay struggled with workplaces in the past due to their sensory issues with fluorescent lighting as well as issues with migraines triggered by particular perfumes. They also suggested that workplaces are too noisy and crowded for them. Anthony felt that he was missing out on job opportunities due to the unaccommodating nature of potential workplaces. David and Kim both found it difficult to get a job. Kim became self-employed so that she could better manage her work environment. The rigidity of the school schedule and having to teach 20 plus children at a time did not suit her needs, despite it being something she was seeking out. At the time of interview, David wanted to be a flight attendant but was finding it difficult to start the process as he felt that he was ‘lacking the required social skills.’

Despite the issues associated with accessing work for Autistic people most of the participants were in education or in work. Some were also looking to find work around their creative interests:

I have a music therapy business that is finally getting off the ground, but right now am barely making anything off it. It’s my biggest goal to have enough clients to have a real income from my business.

Greg, 25, trans man, USA.

My main love is writing, and the real dream is to make that financially viable. I’ve had a few pieces published, and won a couple of competitions, but am still a long way from earning enough to live on.

Anthony, 33, trans male, Australia.

I’m currently retraining in the hope of finding more appropriate work, and so far, the signs are good. I’m making connections and have found brief paid work through those. The pay is very low, but I hope that will eventually change.

Anthony, 33, trans male, Australia.

I’m planning on study astrophysics and music, and hopefully have a degree in them. Also improve my languages skills.

Anette, 27, non-binary queer agender, France.

I want to go to grad school and get an adult MSW, MPH degree and use that to do some community organising slash counselling stuff that involves research.

Micky, 25, trans masculine non-binary, USA.

I just would like to carry on because I really enjoy learning and studying and enjoyed using it as like a way to live somewhere else for three years. So, I was living in [big UK city] before, on like the outskirts, and it would be just like a nice decent excuse to sort of live in [Ireland] without also losing all of my benefits, medications and all that sort of thing as well, and have like a reason and a purpose to be there rather than just turning up.

Sam, 27, agender, UK.

Anthony wanted to retrain so that he could find better work, at the time of interview he was still struggling with low wages. Anette, Micky and Sam were planning on going back to school to gain qualifications to help improve their knowledge and job opportunities. Sam wanted to move abroad to experience a different culture whilst still having the structure and support of a university course. They saw university as a great way of making friends and socialising as well as improving their knowledge and work-based skills. Sam had a lot to organize in order to study abroad and they were concerned about transferring their disability benefits and medical interventions over to another country.

All participants were interested or attending work and education, despite facing major barriers within the workplace including transphobia, ableism and autisphobia, harsh working environments, impact on mental health, and lack of support. Reasonable adjustments, created for the individual, and a safe working environment can allow trans Autistic workers to thrive.

Theme 5: Suggestions for future work on trans Autistic experiences.

Participants were asked about their suggestions for future work on our experiences. Past work has overlooked the lived experiences of transgender Autistic adults, focusing instead on the opinions of parents, medical professionals and educators. Research would benefit from raising the voices of Autistic people, instead of relying on non-Autistic ‘experts.’ Many of the suggestions in this study focused on talking to Autistic trans and / or non-binary children and adults:

I think the first thing, the most important thing is to find transgender Autistic people who are willing to share their stories, and then just listen to them, just except that that is their experience. That that is what they have gone through and be accepting of it and not dismissive of it. That’s basically all you can do, anything outside of that would be exclusionary of them within their experience, which just doesn’t help.

Scott, 31, man, South Africa.

By talking to trans people who are neurodivergent, you know? You want to know what it’s like, ask us! You know, we are here. I know a lot of us would be comfortable answering questions and would quite happily answer questions to help people. [Give us] that option to help educate people.

Derek, 20, trans man, UK.

Just talk to more of us, I guess and have it coming from us, and not make things up about us when you’ve not talked to us […] Yeah, just get more stories out there. It’s fantastic for young people coming out, I think it’s really important. If they could see themselves represented.

Kim, 50, non-binary, UK.

I think, in general, it would just be stop asking people’s parents, for one [laughs]. Because I think just generally autism research is so bad because we only study children and speak to Autistic people’s parents.

Sam, 27, agender, UK.

By making the information easier to find and access, as well as having people actually part of the communities providing the information.

David, 21, trans man, USA.

Participants recommended that trans Autistic people needed to be included in work around our experiences. Derek suggested that trans Autistic people should be given more options to be involved in research, giving us the option to help educate others. As Sam explained, the focus on parent and family experiences damages the independence of trans autistic young people, making things worse for people this research is supposed to help. Robin, a 26-year-old non-binary trans masculine person from the USA, recommends:

Research needs to be including the voices of Autistic and trans / non-binary individuals at minimum, as like a leadership voice, if they’re not running the project they need to at least be strongly listened to, and their ideas incorporated and leading the research. Ideally Autistic and trans people are leading the research themselves, and therefore their voices by default are part of the planning and implementation of said research. I think once that happens like you don’t have to worry about a lot of other stuff like it just falls into place.

Robin explained that issues in research could be avoided by including trans Autistic people, especially within leadership roles. He suggested that such work would focus on participant voices viewed through a trans and Autistic affirming lens. Focusing on the experiences of trans Autistic people within research teams and participant pools challenges the pathology paradigm (the idea that makes autism out to be terrible). Turning away from work which reduces Autistic and transgender experiences to ‘deficits’ will leave space for research which accurately reflects our lives. As Greg, a 25-year-old trans man from the USA, reflects:

While I think a lot of this research could be misguided, looking more at why are autistic people trans or something, rather than how to help trans autistic people access better and more affirming healthcare or access mental health services […] The study and the researchers need to be affirming and informed on autism, trauma, and transgender experiences, I think, for accuracy in the resulting publications. Research in this area needs to be about helping, not just to satisfy curiosity.

Greg suggests that is it not enough to simply create research which explores this overlap, the research needs to explore how to make our lives better through systemic change. He states that researchers need to be better informed to make work which is accurate and useful. Scott, a 31-year-old man from South Africa, said that he often feels like he is being tested on instead of researched with:

It’s very much like… I am one of those science boxes so like the kids get to make slime, and everyone just gets to poke the slime but I’m not a science experiment, I’m a human being! I don’t want to be treated like I am a test tube filled with who knows what, I just want to be treated as a person that’s it but it doesn’t happen often, unfortunately, in in a lot of research, and even in a lot of the support groups, sometimes because they’re run by cisgender neurotypical abled people, then they’re just always poking and it’s – I’m, not an experiment, I am a living, breathing, feeling, human being.

Scott spoke about his frustration with being treated like an object rather than as a human being. Scott reflected that people ‘poke the slime’ within research and support groups because project leaders are cisgender and non-Autistic or focus on parents who are. Unfortunately, lots of autism research, relies on the reporting of parents and carers or the observation of children by professionals. Autistic people are often spoken about but not too, researchers focus on understanding why we occur as opposed to how we could be supported and valued. Understanding us as whole human beings will only happen when researchers understand Autistic experience through a neurodiversity paradigm, an idea which sees autism as another aspect of humanity. Many of the participants understood the importance of being able to share their stories:

I do not think that trans Autistic stories are common enough. It’s easy-ish to find them within the online Autistic community, but I think that outside of that the general public never hears of them. There is also a lot of potential for research in this area that I feel is being overlooked because these stories are not as public […] I think just having more trans autistic stories out there would be helpful and make it more accessible. More people should consider writing blogs or books or articles to share their stories. The more they’re shared and discussed, the more I think people will be able to understand them. I feel like these stories are both complicated and very uncomplicated; like they are personally complex, it’s hard to figure out your identity, but seeing the connections between autism and transgender experiences just seems simple to me.

Greg, 25, trans man, USA.

My hope is that through storytelling we can humanise trans Autistic people more for a wider audience. It’s why I think it’s so important to improve representation. People really connect with stories – whether film or books or videogames – so my hope is that by having more trans and Autistic characters […] we can dislodge some of those old stereotypes and biases people have.

Anthony, 33, trans male, Australia.

I have the same kind of like passion as you, like I want changes to happen and things only happen when people can actually share their stories and thoughts, and I have many thoughts, and I have many stories.

Sam, 27, agender, UK.

Greg suggested that our stories are not ‘common enough’, he recommended that more people share their experiences online and in print to improve representation. Sam and Anthony appreciated the importance of narrative methods (story telling) for sharing our experiences. Anthony suggested that representation should be improved in media as well, suggesting that Autistic, especially trans Autistic people, should be typical characters across Tv, films and books. Sam recognised and appreciated the passion I had for my work and that I was also a part of the community I was researching with. Greg, Anthony and Sam all suggested that change can only occur when people’s stories are heard and shared.

Participants also gave recommendations for improving representation within research through recruitment measures:

Maybe interrogation all ages in the population. And also, seeing in non-Autistic transgender community what they don’t know, to target some question and answer.

Anette, 27, non-binary queer agender, France.

I also would really like to see that include more nonbinary people I have not seen anything that included non-binary people. It doesn’t mean it doesn’t exist, but I haven’t seen it.

Jay, 31, agender, USA.

Yeah, like, so, there’s the sort of Ven diagram of autism and being trans. I’m seeing a lot of people talk about like a third circle to that Ven diagram of hypermobility slash hEDS [hypermobile Ehlers Danlos Syndrome].

Sam, 27, agender, UK.

I suppose it’s just the usual issues of whether you’re reaching a wide enough participant group. For example, I’m white, English-speaking, well-educated and come from a wealthy family, so am pretty stock standard in terms of the type of people you would find hanging around trans and autistic Facebook groups, which tend to be fairly white, English-speaking and middle class (at least from what I’ve observed). I’m not sure how to solve this issue though, as I’ve never been involved in recruitment.

Anthony, 33, trans male, Australia.

All participants gave recommendations for the current study and for future research. Participants wished for different age ranges to be considered, especially within the older ages and many noted that non-binary people were often excluded from research. Sam and Jay both suggested that research on being trans, Autistic and having hypermobile Ehlers Danlos Syndrome (hEDS) would be useful as this is their experience. Sam had read an article about testosterone easing the long-term pain symptoms of hEDS and suggested to their trans masculine friend that they start testosterone sooner as it may relieve their hEDS symptoms. It was noteworthy that two out of thirteen participants made this recommendation. Anthony spoke about an on-going issue through Western academic research: that many participants are white, English-speaking, well-educated and relatively wealthy. Participants had a lot to offer and reflect on around past and current literature limitations, as well as making recommendations for future work.

Limitations and conclusions

This study identified the complex issues as well as the joy experienced by Autistic gender divergent people through their stories. Participants spoke about their mental health, relationships, employment and future ambitions, as well as suggestions for future research on “double rainbow” experiences. It was important to reflect on the other identities of participants to understand how they experience transphobia, family estrangement, substance use, and staying ‘closeted.’ These stories allow others to better understand transphobic and ableist structures, demonstrating the need to continue sharing these narratives. However, focusing on the misfortunes of trans Autistic people would merely have added to the tragedy narrative of our experiences. Therefore, it was important to hear accounts of joy and happiness including creative and specialized interests, chosen family and future aspirations.

I theorised that participants would identify with the neurodiversity paradigm, in which their being Autistic was neither good nor bad, it just was. Participants shared important insight into the current state of both Autistic and transgender discussion and law, some participants also had a good knowledge of current research. All participants had strong recommendations for future research on “double rainbow” experiences, including direct research with transgender Autistic people and research being led by people with lived experience.

Participants’ experiences provide a fascinating example of how our stories connect with each other and within wider circumstances. There were many shared experiences between participants despite living in different places across the world: China, Australia, France, South Africa, UK and USA. Shared themes suggest an overall lack of professional knowledge and support, as well as transphobia and ableism within systems across the world. Transphobic discussion is rife throughout the USA and UK, which is reflected in the laws explored in the introduction. Another shared theme suggests a need and preference for trans Autistic people to create chosen family, with a preference for communal living with other queer, Disabled and Neurodivergent people. However, generalisations are difficult to create from small participant pools, especially given the vast differences between Autistic people’s lived experiences.

Recruiting from across different countries (see figure 1) meant I was unable to fully explore the background of all the participants. The smaller sample size – and my positionality – may explain the over-use of white, well-educated, middle-class participants (something Anthony and I explored during his interview). I recruited participants through online trans, LGBTQIA+ and Autistic spaces which may be unintentionally unsafe for Black, Indigenous People of Colour due to being largely run by white admins and moderators. Intersectional spaces likely exist online although I, as a white person, justifiably do not have access to them. Having an ethnically diverse sample is an age-old problem within research which continues to be a tricky bias to overcome. Future studies in this area should include greater ethnic variability of participants and would benefit from Black, Indigenous researchers of Colour in leadership positions.

Despite recruiting people from different countries, the support resources listed in the participant information sheet were all UK charities and helplines. Future research would benefit from recruitment from a specific country or sharing information of worldwide charities and support services. Fortunately, whilst reflecting on this during an interview, Micky shared a list they had created of USA based helplines which they were happy for me to share with other participants. Sharing of personal stories and resources in this manner reflected the nature of this work, as one of mutual bonding which evolves both people. Participants and I reflected on shared issues together – we shared information on ableist and transphobic celebrities, compared UK and USA gender identity laws, and reflected on how we engage with others in Autistic and / or LGBTQIA+ spaces.

Interestingly, three participants recommended that more trans Autistic people should share their stories to help spread awareness, acceptance and inclusion. Unfortunately, transphobia and ableism has made trans Autistic people invisible in research about our experiences. That is why it was important for me, a trans masc non-binary Autistic person, to lead work with other trans Autistic people. Through storytelling we took back control over our individual and community narratives, declaring our place in the world. Using the neurodiversity paradigm allowed us to share experiences of cruelty and unsupported needs as well as joy, comfort and truth. Refusing to use the pathology paradigm allowed me to create meaningful work with participants not to them. Through conversations with trans Autistic people, the current study serves as a model for future work to include our voices in any investigation on our experiences. Sharing these accounts makes for wider understandings of transgender and queer experiences and the disciplines of Critical Autism and Disability Studies. Reflecting on our experiences as people who live under the “double rainbow” can enhance the colours for all.

Stories from across the “double rainbow”: Transgender and non-binary Autistic narratives

This article can be downloaded and referenced through: http://dx.doi.org/10.13140/RG.2.2.34886.75843

Abstract:

Clinical impressions suggest a significant overlap of Autistic and transgender / non-binary identities. Most of this work focuses on prevalence rates and the perspectives of non-Autistic cisgender professionals and parent / carers, leaving the narratives of trans Autistic people overlooked. This study aimed to share trans Autistic narratives to contribute to knowledge around our lived experiences, as well as creating recommendations for future research in this area. This study represents findings from interviews with thirteen transgender and / or non-binary Autistic people (ages 20 to 50). Of interest was the way participant’s expressed their intersecting identities through narrative methods and what recommendations they would make for future research on transgender Autistic experiences. Participants spoke about a variety of life experiences including mental health issues, making and maintaining relationships, future aspirations and experiences with employment. Participants also gave recommendations for future work, including diversifying participant pools by ethnicity, age, physical disability and gender identity, as well as participatory approaches which include gender divergent Autistic people at all levels of study.

Introduction

People who live at the intersection of transgender and Autistic identities are marginalised by unsupportive services and systems (Bertilsdotter-Rosqvist et al., 2013; Gratton, 2020) but can also experience great joy through their authentic individuality (Adams & Liang, 2020; Dale, 2019; Sparrow, 2020). This introduction shall present the context surrounding transgender and / or non-binary Autistic experience by firstly exploring the wider UK and USA context of transgender law. I will then discuss harmful Autistic stereotypes which make access to gender affirming support inaccessible. Next, I will summarise trans Autistic research, including any areas of improvement and gaps in knowledge. Then, I shall make an argument for shifting research paradigms from pathologising to neurodiversity-affirming and how this could affect future trans Autistic research. Lastly, I will set out the current study including areas of focus, research questions and a note on inclusive language.

The methods section explains the data collection process, accessibility for participants, participant demographics and data analysis methods. This is followed by an ethics chapter which describes the issues around consent, confidentiality and anticipated risks and concerns and how these were navigated. The findings and discussion section presents verbatim quotes from participants and places them in current research and real-world contexts. Finally, the limitations and conclusions chapter summarises the current study and sets out recommendations for more trans and neuro affirming work.

A note on language:

Although there is no clear consensus within academic literature regarding the preferred terminology among Autistic people (Botha et al., 2021a; 2021b) there appears to be a consensus on the least preferred, that being person-first language: “person with autism” (Bottema-Beutel et al, 2021; Flink, 2021; Gernsbacher, 2017; Kapp et al. 2013; Kenny et al. 2016; Sinclair, 2013; Walker, 2021). Throughout this project I have used identity-first language to reflect the way the participants spoke about their own relationship with being Autistic.

Additionally, I have capitalized the words ‘Autistic’, ‘Neurodivergent’ and ‘Disabled’ throughout my work, I have used them as proper nouns to better represent our individual identities and community cultures (Brown, 2013).

I have used the term ‘transgender’ and ‘trans’ as umbrella terms encompassing (but not limited to); trans-masculine, trans-feminine, non-binary, agender and gender fluid identities. My work focused on the experiences of trans men, trans women and non-binary people. Some participants did not identify as transgender, so I have also used gender divergent to reflect this.

Context

Western society often considers gender as binary, but some of us fall somewhere along the gender spectrum, with transgender prevalence rates estimated at 1.1% in adolescent and adult populations (Flores et al., 2016). The rise in the visibility of gender divergent identities – with increased proliferation of trans experiences through online content – has created what has been described as ‘the transgender tipping point’ (Steinmetz, 2014, p.7). This tipping point has been punctuated by a dramatic rise in academic and autobiographical literature on gender diversity (Andrews, 2014; Bertie, 2017; Butler, 2004; Ehrensaft, 2018a; 2018b; Hill, 2014; Kourti & MacLeod, 2018) in which trans people can finally understand and see themselves reflected in media. However, increased visibility has been meet with a spike in public transphobia, including the continued perceived controversy of transgender athletes at sporting events and gender-neutral toilets in public spaces (Grez, 2022; The Guardian, 2022; Petter, 2020; Quadri, 2022).

The existence and continued participation of trans people in all areas of society remains a source of great debate in British media and politics. Despite protective factors afforded to trans people by the Gender Recognition Act (2004), which allows us to change the gender markers on legal documents, many trans people still experience fear and prejudice from wider society (Home Office, 2021). Anti-trans discourse grounds its argument in the protection of women in women-only spaces however this overlooks that trans people are four times more likely to be victims of violent crime than our cisgender counterparts (Williams Institute, 2021). Additionally, trans people report higher rates of hate crime year-on-year – in 2020/2021 2,630 hate crimes against trans and non-binary people were recorded by the British police, a 16% increase on the previous year (Home Office, 2021). These numbers are likely to be higher due to those who do not report hate crime, including 88% of trans respondents to the National LGBT Survey who did not report (Government Equalities Office, 2018).

The rise is transphobic hate crime is affected by public policy, including the changes to UK health policy which have created further barriers to puberty-blocking therapies for transgender children (NHS, 2021). In October 2020, three UK High Court Judges ruled that children under the age of 16 could only access puberty-blocking drug treatment with court approval (NHS, 2021). The most recent ruling confirms that those under the age of 16 may be able to give informed consent without the need to obtain a best interest order from the court. The final decision now lies with their doctors, adding unnecessary bureaucracy to an already unnavigable processes (Lawrie, 2021). This ruling has extended waiting times for medical intervention, which has the potential to cause inconceivable trauma to young people who often struggle with poor mental health due to untreated gender dysphoria (Kaltiala-Heino et al., 2015; Littman, 2018). Furthermore, constant changes to policy affect all children pursuing or undertaking medical treatment and may be particularly problematic for Autistic children who have been reported to represent a disproportionate number of patients in gender identity clinics in the UK (Adams, 2018).

Similar policy changes have recently come into effect in Texas, USA, where Governor Gregg Abbott likened supporting children with puberty blocking medication to ‘child abuse’ (Milton, 2022). Governor Abbott published an order which outlined that any person, professional or otherwise, who failed to report such ‘abuse’ to authorities may be subject to criminal charges (Milton, 2022). These policies, and the public discourse which underpins them, are negatively impacting thousands of transgender youth and adults across the globe, affecting those who are seeking or undergoing medical transition. This is particularly problematic for Autistic people who often have greater difficulty in accessing gender affirming healthcare due to false beliefs that their neurodivergence ‘impairs’ their understanding of gender (Baron-Cohen 2002; Baron-Cohen et al., 2001; Brewe, 2020). Autistic people are more vulnerable to concepts which frame us as lacking sufficient self-awareness and knowledge (Duke, 2011). As one Autistic transgender woman reflects:

An adult’s assumption that having an autism spectrum condition means you are incapable of proper self-understanding, or that you’re susceptible to being manipulated into believing things about yourself that you did not previously (Dale, 2019, P. 79).

Here, Dale (2019) stated that older family members and professionals believed she was incapable of understanding her own gender identity. Unfortunately, much modern literature still use these inappropriate stereotypes, further strengthening barriers to gender identity healthcare for Autistic people (Baron-Cohen, 2002; Turban, 2018; Van der Miesen et al., 2016; 2018). These stereotypes underpin harmful and inappropriate changes in policy, which leads to research which is out of touch with its study group. Research, policy and overall outcomes can be improved by collecting and sharing transgender Autistic narratives directly form trans Autistic people.

Autistic transgender identities and narratives is a relatively new area of academic interest, perhaps due to the increased number of openly gender divergent people in Europe and the USA (Herman et al., 2017; Rider et al., 2018), as well as increased clinical diagnosis of autism (Brugha et al., 2018). Due to the infancy of this field, much research is focused on prevalence rates; finding a considerable proportion of Autistic participants who are transgender, non-binary or otherwise gender divergent (Barnett & Maticka-Tyndale, 2015; Brown, 2016; Walsh et al., 2018). Transgender identities have been estimated to be twice as common in Autistic individuals (George & Stokes, 2016), with some studies finding that 50% of their Autistic respondents identified as non-binary or transgender (Bush, 2016). Correlations have also been found in research focusing on transgender identities – with an over-representation of 6.5% of Autistic characteristics amongst gender divergent youth (Van der Miesen et al., 2018). This intersection may be better understood through Neuroqueer theory (Walker, 2021) which suggests that Autistic people are more likely to queer other elements of our lives, including our gender and sexuality, as we have different cultural norms to those in the neuro-majority. The transgender-Autistic intersection has been described as living under the ‘double rainbow’ (Morgan, 2019) referring to the colours which represent both queer and Neurodivergent identities.

Despite an increase in prevalence studies, the size and nature of this co-occurrence remains unclear. Understanding this overlap is complicated by differences in focus and criteria across studies; for example, work which focuses on the co-occurrence of autism and gender dysphoria (De Vries et al., 2010; Jones et al., 2012; Lehmann & Leavey, 2017; Lehmann et al., 2020; Mahfouda et al., 2019) cannot easily be measured against non-medical prevalence work (Cain & Velasco, 2018; Strang et al., 2018b; Walsh et al., 2018). The current focus on gender dysphoria requires recruitment of participants through gender identity clinics; whilst a valid strategy, this excludes individuals who have not been clinically diagnosed and do not want to access gender affirming healthcare (Drescher & Pula, 2019). This focus skews prevalence rates and upholds trans-medicalist views which suggest all transgender people seek medical intervention, invalidating many trans, non-binary and agender experiences. This may explain the lack of research on Autistic people with non-binary and agender identities, who may be less likely to engage in gender affirmative healthcare (Kung, 2020).

Due to past oversights many transgender and / or non-binary Autistic people are being overlooked in the current literature – those of us who do not fit perfectly into the prescribed autism and transgender boxes. Those of us who challenge neuro-normativity and cis-normativity by actively exploring how these two aspects of our identities interact and entwine. Those of us who neuroqueer by subverting our own cultural conditioning and reclaiming our authenticity (Walker, 2021; Yergeau, 2018). This can include Autistic gender divergent people who transition in less typical ways, such as keeping their birth name, not engaging in medical intervention and expressing themselves in ways that feel comfortable to them as individuals. The current study is one founded on neuroqueer-ing – creating work which hopes to transform social and cultural ideas to create a society in which neuroqueer-ing practices are understood, accepted and encouraged (Walker, 2021).

Shifting research paradigms

Despite an increased interest in the overlap of gender divergent and Autistic identities, much of the work exploring this intersection uses stigmatizing language and theoretical underpinnings which marginalize neuro and gender divergent people (Hannah & Stagg, 2016; Kallitsounaki & Williams, 2020). A significant amount of this work uses a pathology paradigm which frames being Autistic as an impairment, disorder or burden (De Vries et al., 2010; Perera et al., 2003; Stagg & Vincent, 2019; Turban, 2018). The lack of diversity-positive work is in part due to the academic focus on prevalence rates, utilized to suggest correlations between the ‘issues’ of gender divergent identities and the ‘social deficits’ of neurodiversity. The pathology-related word ‘comorbid’ is often used to describe the relation between individuals being both Autistic and transgender (Kung, 2020; Tateno et al., 2018). ‘Comorbidity’ presumes that one pathology causes the other, allowing transphobic and ableist rhetoric to underpin norms and power structures which further oppress trans Autistic people (Garland-Thomson, 2020; Shapira & Granek, 2019). The overuse of neurotypical and cisgender perspectives on transgender Autistic individuals may explain the use of pathologizing language and frameworks in past studies, including the Extreme Male Brain theory (Baron-Cohen, 2002).

The Extreme Male Brain theory posits autism as an overdevelopment of male-typical traits such as logical thinking, high levels of perseverance and low emotionality (Baron-Cohen, 2002; Baron-Cohen & Hammer, 1997). This theory suggests that Autistic women and girls are hyper-masculine in specific aspects of their behaviour and cognition, supposedly related to elevated levels of foetal testosterone (Ayeung et al., 2010). This theory bases trans-masculine experiences on questionable models of hegemonic masculinity (Connell, 1995), suggesting that all men, boys and Autistic people have an ‘empathy disorder’ (Baron-Cohen, 2002). Furthermore, this overlooks transgender identities in Autistic people assigned male at birth, and explicitly reinforces gender stereotypes which strengthens the concept of autism as a ‘male-only’ neurology (Jack, 2011). In contrast, there are indications that Autistic people who are assigned male at birth consider themselves to be considerably less masculine than their neurotypical peers (Cooper et al., 2018). Similarly, Autistic people who are assigned female at birth are three times more likely to identify as non-binary than as trans men (Cooper et al., 2018). Studies which use the Extreme Male Brain theory (Baron-Cohen, 2002) to explain Autistic traits in trans-masculine people, invalidate the experience of women, trans-feminine and non-binary people (Kung, 2020; Van der Miesen et al., 2016).

Research which discusses gender divergence amongst Autistic people, suggests that ‘success’ in gender is measurable to neurotypical norms, framing Autistic gender identity as a manifestation of Autistic insufficiency (Brewe, 2020). Viewed through a pathology paradigm Autistic gender divergence is broadly conceptualised as a deficit owing to an imbalance in prenatal testosterone (Auyeung et al., 2010; Baron-Cohen, 2002), rigidity of thought (Holt et al., 2016) and obsessive behaviour (Van der Miesen et al., 2018). This implies that Autistic people are not valid members of the trans and non-binary community. As one trans Autistic person reflects:

Hillary (2020) admitted that they have little knowledge of gender but suggested that it was inappropriate for the researcher to imply this on their behalf, especially when said researcher appeared to be just as unknowledgeable. When researchers speak on behalf of Autistic participants, it implies that neurotypical people have authority and knowledge that is beyond the cognitive abilities of Neurodivergent people (Yergeau, 2018). Such pathologising practice maintains the infantilisation of Autistic people and disregards the double empathy problem – that neurotypical people often fail to read the social cues of Neurodivergent people (Milton, 2012). Hillary’s experience highlights that some researchers understand gender confusion as an Autistic characteristic, assuming that Autistic people do not understand the fundamentals of binary gender identity. Not only does this view support the continued infantilisation of Autistic people it also invalidates and erases gender fluid identities, in which confusion and flux is the norm.

The pathology paradigm restricts the scope of research as there is no exploration of Autistic joy and pride. This may explain why, despite a recent increase in empirical studies exploring “double rainbow” experiences, there remains a significantly smaller number of studies lead by trans and / or non-binary Autistic researchers (Adams & Liang, 2020; Sparrow, 2020). A shift in research paradigms is needed to improve autism-related research and knowledge, creating work which frames Autistic people more accurately and positively, whilst still understanding the significant support needs many of us have (Walker & Raymaker, 2020). Fortunately, there is a growing area of research which explores and celebrates intersectional divergence, using critical disability perspectives to break down barriers to awareness and acceptance (Adams & Liang, 2020; Bertilsdotter-Rosqvist et al., 2013; Dale, 2019; Gratton, 2020; Sparrow, 2020). This work views Autistic experience through a neurodiversity paradigm, understanding Autistic identities as a form of human diversity affected by systemic oppression and power inequalities. The neurodiversity paradigm challenges the pathology paradigm’s medicalization of autism, exposing this framework for what it is: a cultural value judgment (Walker, 2021).

Thankfully, the neurodiversity paradigm has begun to permeate academic research, which has seen a modest rise in studies conducted by trans Autistic researchers and their allies (Bertilsdotter-Rosqvist et al., 2013; Davidson & Tamas, 2016; Ehrensaft, 2018b; O’Dell et al., 2016; Strang et al., 2019). Consequently, the intent of academic research has begun to change from one determining prevalence rates to one fighting stigma, improving access to healthcare and advocating for disability and trans rights (Gratton, 2020). Similarly, research by allies has created more inclusive recommendations for practice in gender identity healthcare and education by reflecting on participant experiences and feedback (Lehmann & Leavey, 2017; McGuire & Zener, 2019; Miller, 2019; Strang et al., 2018b). Reframing “double rainbow” experiences has started to improve cultural awareness and responsiveness of practitioners and has created professional allies who are aware of the ongoing violence experienced by gender divergent Autistic people (Gratton, 2020).

Current study and research questions

This study appreciated that Autistic individuals come from across the gender spectrum, in so doing it permitted a critical reflection on gender and neuro normativity which allowed nuanced knowledges to emerge (Davidson & Tamas, 2016). Furthermore, sharing real-life accounts allowed participants to become self-advocates, showing others that their experiences are a uniquely powerful and a valuable element of human diversity. This work on “double rainbow” narratives could strengthen theoretical underpinnings for research, creating recommendations for more appropriate and inclusive practice. As one Autistic non-binary researcher recommends:

Sparrow (2020) suggested that research would benefit from the voices of trans Autistic people as the experts of our own experiences. This view is echoed in current Autistic experience work which suggests that there is something inappropriate about ‘needing others’ to act as an authority on Autistic lives (Yergeau, 2018). This work proposes that professionals use the recommendations of trans Autistic people to strengthen their support provisions, asserting that no decisions should be made without the active participation of Disabled people. This research paradigm would reflect the motto of the disability rights movement ‘nothing about us without us’ (Charlton, 2000).

Through my study I was able to recruit participants with various experiences of Autistic diagnosis and access to gender healthcare to widen my knowledge on these intersectional identities (Lawson, 2019). Looking through a neurodiversity paradigm lens allowed me to focus on the individual experience and enabled me to use inclusive methodology and language which better reflected the needs, interests, and identities of participants. Narrative constructivist methods (Esin et al., 2014) also allowed for a more critical reflection on divergent genders and neurologies which gave greater insight into these significant aspects of human diversity. Understanding that knowledge is historically and culturally specific, and that each person perceives the world differently, allowed me to view all narratives as equally valid (Sarbin, 1986). Knowledge, and therefore narratives, are made from subjective, multiple truths, meaning participants were able to take an active role in the retelling and means-making of their experiences (Burr, 2015; Mertova & Webster, 2020). Reflecting on these meanings helped me answer the following questions:

How do trans and / or non-binary Autistic people express their own intersecting identities?
To what extent can narrative methodology enable gender divergent Autistic voices to be heard?
What recommendations would Autistic gender divergent people give to improve research which explores this intersection?

These lines of inquiry helped me explore how Autistic gender divergent people can be engaged within work on our lived experiences, allowing us to contribute to the growing field of narrative-based research led by gender and neuro divergent researchers. These questions were of particular importance to me as a queer, non-binary, Autistic person, and as a practitioner who works with gender divergent Autistic young people. I hypothesised that participants would understand themselves in relation to the neurodiversity paradigm, that their experiences as Autistic people spanned the emotional spectrum. I also theorised that participants would have firm recommendations for future research on our lived experiences which centre around the ideal of ‘nothing about us without us’ (Charlton, 2000).

Methods

The stories people tell about themselves interweave self-identity, understanding and belonging into the wider context of society (Plummer, 2001). Consequently, storytelling is not just a creative act but also a political one, allowing people agency over how they understand and communicate their experiences and assert their place in the world (Becker, 1997). Co-constructing stories within this research allowed me to represent full and authentic narratives of transgender and / or non-binary Autistic people, asserting that we cannot understand people’s experiences without recognising the context in which they happen (Sarbin, 1986; Cain & Velasco, 2018).

Narrative methods helped me illuminate critical life events in detail which allowed me to present holistic experiences in all their richness and complexity (Nichols, 2013; Plummer, 1995). Narrative methodologies allowed me to present and celebrate transgender Autistic voices which are often pathologized and understood through the lens of neuro- and cis-normativity (Jackson-Perry, 2020). Sharing these stories highlighted the importance of participant feedback and engagement which allowed me to collect robust recommendations for future research (Shapira & Granek, 2019). I used a critical interpretivist lens to reflect on the variability of participant social interactions and interpret their stories using my own experience as an Autistic non-binary person. Observing the stories of participants through this lens produced in-depth data which allowed me to accurately present powerful and influential stories. As transfeminine actress Christine Jorgensen explains:

Here, Jorgensen indicated the importance of sharing her story to improve understanding, acceptance and support for transgender people (Jorgensen, 1967). Jorgensen’s story was one of the first autobiographical accounts around medical and social transition and remains a staple of modern transgender narrative. Such narratives have grown with greater cultural awareness and acceptance, framing transgender Autistic lives as both precarious, livable and entirely grievable (Butler, 2010; Cremin et al., 2021). These livable stories can be used to examine relevant topics in current social discourses – enabling professional, societal and political change (Baroni 2011; Herman, 2009; Schmid, 2010; Shenhav, 2015). Such powerful insights may be overlooked or misrepresented by more traditional modes of inquiry which uphold modernist-empiricist values (Mortova & Webster, 2020).

Life history narratives, which comment on lived life and the interactions which emerge from storytelling, encouraged participants to focus on the parts of their humanity they most identified with (Plummer, 1995; 2001). This helped me to understand how participants expressed their intersecting identities and allowed for an almost therapeutic quality to the telling of these stories. Looking through a neurodiversity affirming lens supported the creation of work which reflects Autistic people more accurately and positively, whilst appreciating the considerable support needs many of us have (Walker & Raymaker, 2020). This qualitative approach complimented my ontological worldview, in which I understand truth as flexible, rich and contextually dependent, as well as my epistemological commitment to disability and queer activism which centres the voices of those we research with. Co-constructing our personal stories may ultimately develop greater understanding, acceptance and pride, leading to academic and social transformation (Plummer, 1995; Purkis & Lawson, 2021).

Positionality

The study was affected by my position as a non-binary Autistic person who works with Neurodivergent children. Throughout my work, I reflected on my own experiences, both professional and personal, and ‘did not feign the distanced impartiality of an outside observer: [as] it would erase my own queer Autistic voice to do so!’ (Sparrow, 2020, p.164). My lived experience supported the representation of these narratives in a more appropriate way than that of a cisgender neurotypical researcher, as I share Autistic and queer cultural background with participants. Furthermore, participants were told of my identity upon recruitment, and some commented that they were more comfortable talking to a researcher who shared parts of their identities (something I shall explore further in the discussion and conclusion sections). My position influenced my recruitment of participants, as I recruited through trans, LGBTQIA+ and Autistic spaces online which I have been a member of for some years. I may have unintentionally sought out participants who reflected my own experiences and views, however, it is essential to remember that no two Autistic people and their experiences are the same, despite any similarities or identities that we may share (Mendes & Maroney, 2019).

Data collection

Data was collected through 8 one-to-one interviews, which used a mix of closed- and open-ended questions. Interviews followed the Biographic Narrative Interpretive Method (Wengraf, 2001) whereby I carefully constructed a single question to begin the narrative portion of the interview process. Subsequent questions were then made from the topics raised; participants lead the conversation which allowed for more diverse data sets (Wengraf, 2001;2002).

Using open-ended questions and prompts allowed me to obtain a large amount of rich data, focusing the discussion on core issues, without overly limiting responses or directing the conversation (Adams & Liang, 2020). Positioning the ‘whole story’ as the object of study, as opposed to essentialising participants to their various identities, gave participants agency over their stories (Cain, personal communication, 4 January 2021). Basing my semi-structured interviews in McAdam’s (2008) life story protocol allowed participants to direct the conversation. This allowed for a more relaxed interview environment in which I could interact with participants in a more fluid and dynamic manner, jointly constructing story and meaning (Hand, 2003). Participants were able to direct their narratives, dedicating time to the parts of their story which they felt were most prominent. This method showed appreciation of the non-compartmental nature of life stories which are also affected by individual and cultural perceptions, contexts and events (Goodson & Sikes, 2001). Exploring these experiences within context enabled myself and participants to challenge dominant cultural narratives.

Participants provided demographic information through close-ended questions on age, pronouns and ethnicity, which allowed me to efficiently compare data across the sample to understand the overall location of my participants. The questions on ethnicity, gender and pronouns had free-text boxes to avoid othering already marginalised groups, furthermore participants may hold several identities which a tick-box would not fully appreciate (George & Stokes, 2016; 2018).

Interviews were conducted via Zoom and were recorded, these were then transcribed and analysed using Nvivo. Using Zoom for online interviews was a convenient and efficient way to collect data, allowing participants to be interviewed in the comfort of their own homes, making them more likely to share vital information (Horrell et al., 2015; Salmons, 2011). Using Zoom also meant that I could talk to people across the World, including South Africa, Australia and the USA. Zoom features real-time encryption of conversations, user-specific authentication and the ability to securely record, store and share sessions. These features are especially important when collecting and storing sensitive and personal information (Zoom Video Communications Inc., 2016). Fortunately, there were very few connectivity issues, and everyone – save for one participant who decided to write their answers instead – was able to understand how to use Zoom, so the benefits outweighed any potential technical issues (Hewson, 2008).

There was potential for participants residing in the UK to interview via the telephone, but none opted for this. I wanted to give this choice as previous research has found that many interviewees, when given the option, chose a telephone interview instead of a face-to-face interview and were appreciative of being given the choice (Holt, 2010; Sturges & Hanrahan, 2004).

Data collection: accessibility

Participants were given options in how they engaged with the research, making things more accessible to those with varying social, technological and time-based needs. Participants who opted for an online interview could be sent a copy of the written question and prompts beforehand, enabling them to process expectations, which has proven successful in previous work with Autistic and non-Autistic participants (Benford & Standen, 2011; Mendes & Maroney, 2019; Nicolaidis et al, 2019). One participant wrote their answers beforehand, giving themselves significant talking points to draw from which appeared to make them more at ease.

Participants were given the choice to fill in the interview question sheets by themselves, whilst being able to contact me if they have any questions. The question sheets had suggested word counts and prompts to help participants understand and answer the questions. The questions were the same for all written interview participants. The five participants who chose this method did so due to living in time zones which made scheduling difficult, feeling anxious around using Zoom or as a general preference to answer the questions at their own pace in writing.

Participants were given several choices on how they would like to engage with the face-to-face interviews. Some participants were comfortable taking each question at a time, whereas others wanted the question and prompts given to them beforehand so they can choose how to navigate them.

Using Zoom allowed me to use closed captions which were available to all participants to help with processing the spoken word. Zoom also allowed for different choices of engagement including typing instead of speaking, this is an important option as many Autistic people can become overwhelmed in new situations which can lead to situational mutism (Gillott & Standen, 2007; Muris & Ollendick, 2021). Participants were also given the choice whether to keep their camera on or off, although all opted for using their cameras.

I also gave the option to participants for a pre-meeting, either online, on the phone, or through email, to ensure that the process was comfortable for them – these considerations are important as many Autistic people have generalised and / or social anxiety (Gillott & Standen, 2007; Kerns & Kendall, 2012).

Participants

I collected data from 13 participants who are Autistic, either formally or self-diagnosed, and transgender and / or non-binary. Recruiting self-diagnosed participants allowed for a more diverse participant pool, as diagnosis can be unwanted or inaccessible for some people (Galliver et al., 2017). Non-clinical recruitment also allowed for more diverse participants and narratives, appreciating that not all trans people seek medical intervention (Pearce, 2018). I focused on adults aged 20-50, to account for late diagnosis of autism (Begeer et al., 2013; Siklos & Kerns, 2007) and ‘later life’ gender transitions (Hinsliff, 2018). My focus was on trans-masculine, trans-feminine and non-binary participants (although many participants held several other gender identities too) focusing on these identities allowed me to compare my findings to that of previous work (Adams & Liang, 2020; Bush, 2016; George & Stokes, 2016; Strang et al., 2016).

I recruited 8 participants for face-to-face interviews and a further 5 for written interviews. The recruitment numbers reflect the amount of time I had to collect and analyse data in a meaningful way. Time management was crucial as I wanted to represent and explore stories in more depth. Using smaller sample sizes allowed me to reflect on individual experiences without explicitly focusing on gender or neurology (Mendes & Maroney, 2019). I explored these stories through a critical interpretivist lens – which understands truth and reality as unknowable. This asserted that participants create their own reality and therefore affect the shared knowledge and understanding of lived experiences and context (Gournelous et al., 2019; Kong et al., 2002). Examining subjective experiences reflects the validity of multiple interpretations, including those of participants, researcher and readers (Plummer, 2001). Readers shall ascertain whether these accounts are valid through critical reflection, provoking change within and without transgender Autistic communities (van Luyn & Gair, 2017).

Participant demographics

No.	Pseudonym	Place of residence	Age	Ethnicity	Gender	Pronouns
1	Sam	UK	27	White	Agender non-binary	They / them
2	Jay	USA	31	White	Agender non-binary	They / them
3	Derek	UK	20	White	Trans man / man	He / him
4	Scott	S. Africa	31	Dual heritage	Trans man / male	He / him
5	Micky	USA	25	White	Trans masculine non-binary	They / them
6	Kim	UK	50	White	Non-binary	She / her
7	Robin	USA	26	White	Non-binary trans masculine	They / him
8	Toby	UK	33	White	Non-binary	They / them
9	David	UDS	21	White	Trans man	He / him
10	Anthony	Australia	33	White	Trans male	He / him
11	Greg	USA	25	White	Trans man	He / him
12	Anette	France	27	White	Non-binary, queer, agender	Elle / she / they
13	Ronnie	China	34	Chinese	Non-binary	They / them

Figure 1: participant demographics

Recruitment

Participants were recruited through a multi-stage process, which changed between plan and implementation. Firstly, I posted a call for participants on private Facebook groups for people who are both Autistic and trans and/or lesbian, gay, bisexual, trans and queer (LGBTQIA+). I have been an active member of such groups for several years, so I used my affiliation here to gain a convenience sample (Bryman, 2012). I had plans to recruit through wider platforms and snowball sampling, however enough participants were recruited through the first stage.

The inclusion criteria was that participants were trans-masculine, trans-feminine and/ or non-binary – although participants could hold several other gender identities too. Participants were recruited from across the world (UK, USA, South Africa, France, Australia and China) and needed to be able to communicate in English via text or speech. Talking to people from different countries made for some interesting themes and data, however it was more difficult to contextualise the findings from each participant.

Data analysis

I used thematic analysis (Braun & Clarke, 2006; 2021) to identify differences and similarities across a diverse range of narratives. I identified repetition, recurrences and forcefulness of themes through a six-step approach: reading the data, creating initial codes, looking for themes, reviewing themes, naming and defining themes and producing my overall report (Kuvalanka et al, 2018; Owens, 1984). Once I completed open-coding I generated broader themes until I was satisfied that the thematic narrative accurately reflected the data. Coding for themes across interview answers helped me to understand how narrative methodology could raise transgender Autistic voices, outlining recommendations for future work.

Ethical considerations

I created participant information sheets which explained the study and detailed the potential risks and benefits of participation. I requested consent for the following: for the interview to be audio recorded; inclusion of verbatim quotes within the final thesis and potential future work; and anonymisation.

Study information was distributed to participants three days prior to their interviews as Neurodivergent people often need more processing time when engaging with something new (Brewe et al., 2020). This allowed participants to process the information and raise any questions or concerns before the start of their interview. Consent was discussed before interviews to ensure that participants were fully informed and comfortable in their participation. I followed the frameworks for ethics and consent set out by University of Portsmouth and the British Sociological Association.

All participant data was anonymised, and pseudonyms were used to protect their identities. This is important as some interviewees were not ‘out’ in their gender and / or neurology therefore sharing this information without their consent could have affected harmful treatment in their everyday work and home lives (Brumbaugh-Johnson & Hull, 2019; Davidson & Henderson, 2010; Kinnear et al., 2016; Robinson, 2018). I also used pseudonyms for places and names within stories to ensure the participants privacy. All data was stored and shared in line with Data Protection Act (2018) and all participants were informed of this in the information and consent forms.

Findings and discussion

This study represents an in-depth examination of the individual narratives of 13 gender divergent Autistic adults. This investigation found five major themes which create the structure of this chapter; firstly, I explore the issues of mental health and trauma including inaccessibility of gender identity healthcare and queer spaces. I then discuss the participants experiences of relationships and socialising, including queer platonic relationships, communal living and family breakdown. Next, I present the participant’s aspirations including work, further education, raising children and gender affirming care, as well as the potential barriers to these aspirations. Fourthly, I consider employment and education, focusing on the benefits of self-employment and the obstacles to work and education for trans Autistic people. Lastly, I explore the recommendations participants made for future work, the application of which shall be considered in more depth in the concluding chapter.

Theme 1: Mental health and trauma

Mental health issues are often considered a co-occurring condition for Autistic people (Lai et al., 2019; Simonoff et al., 2008), transgender people (Rees et al., 2020; Yarbrough, 2018) and those who are both gender divergent and Autistic (George & Stokes, 2016; Murphy et al., 2020; Van der Miesen et al., 2018). Many studies which explore mental health issues in Autistic trans populations use participants who are diagnosed with gender dysphoria, a condition which has a harmful impact on daily life often leading to depression and anxiety (NHS, 2022). However, the findings from such work are non-generalizable as many gender-divergent people feel no mismatch between their body and gender identity – or do so at levels which would not be considered dysphoric (Drescher & Pula, 2019). Furthermore, focusing on those who use gender affirming healthcare can exclude those who cannot access support due to a formal diagnosis of autism. As one participant, Derek, a 20-year-old trans man from the UK, explains:

Derek talked about a friend who had experienced barriers to their gender affirming healthcare due to a formal diagnosis of autism. Their gender divergence was questioned due to the stigma which still surrounds autism, including that Autistic people cannot understand gender or that our gender identity is ‘just a phase’ (Purkis, cited by Muller, 2021). Unfortunately, the literature which is utilised to diagnose autism reproduces ideas of Autistic ‘difficulties’, ‘deficits’ and ‘inabilities’ (APA, 1994; 2013; Baron-Cohen, 2002; Baron-Cohen & Hammer, 1997). When Autistic experiences are viewed through a pathology paradigm Autistic people suffer from unnecessary abuse and discrimination from within and without the medical profession (Menezes et al., 2021; Roberts et al., 2015). The systemic pathologisation of Autistic people means many of us struggle to gain support, with some of us completely disengaging with gender affirming healthcare (Strang, cited by Muller, 2021). Furthermore, gatekeeping can strain the mental health of trans Autistic people, who often feel overwhelmed by illogical bureaucracy and high-sensory environments (Lehmann & Leavey, 2016; Phan et al., 2020; Scheerer et al., 2021). As Scott, a 31-year-old man from South Africa, reflects:

Scott explains that accessing gender affirming healthcare comes at the expense of his mental health due to the overwhelming environment in which he can access care. He describes the settings in which he can find help as places which add to his discomfort and overwhelm. Similar was stated by Greg, a 25-year-old trans man from the USA:

Greg described the process for accessing top surgery as overwhelming. He explained that he would have to make several phone calls, which he finds very difficult due to differences in communication. He also shared that he would need to better understand the intricacies of his medical insurance. Navigating gender affirming healthcare is executively demanding; patients need to organize appointments, admin and correspondence whilst experiencing a highly emotional personal journey (Strang et al., 2021). Privatised healthcare brings additional administration which can be difficult to understand and advocate for. Unfortunately, this meant that at the time of interview Greg had not started this part of his medical transition. Greg and Scott explained that accessing gender affirming care had negatively affected their mental health, this was a shared experience for them despite living over 8,000 miles apart. This strain on mental health can cause some help-seekers to start their own treatments without medical assistance, as Derek, a 20-year-old trans man from the UK, explains:

Derek’s friend had reached ‘crisis point’ and decided to start hormone replacement therapy without medical assistance before their mental health deteriorated further. However, without regular check-ups this person, and others who self-medicate, are putting their physical health at risk (Nambiar, 2018). Gatekeeping and inaccessibility within medical settings force trans Autistic people to choose between improving their mental health at the risk of physical harm or forgoing supported transition and experiencing greater rates of self-harm, suicide ideation and attempt (Reisner et al., 2015; Romanelli et al., 2018). A diagnosis or self-confirmation of autism should not exclude people from gender affirming support, under the neurodiversity paradigm trans Autistic people would be reassured that their neurology does not preclude them from affirmative clinical care (Turban & van Schalkwyk, 2018).

Mental health issues made worse by inaccessible and harmful gender healthcare practices are often compounded by long-term trauma responses to domestic abuse, neglect and toxic relationships (Giovanardi et al., 2018; Giraldi, 2020; Silva et al., 2022). Some participants mentioned these issues however they were not explored in depth so as to protect the mental well-being of participants (Bauchner, 2002; Federman et al., 2013). One participant, Micky, a 25-year-old trans masculine non-binary person from the USA, spoke about going to a friend’s house for Thanksgiving as they no longer felt comfortable going to their familial home. They said they had experienced “some abuse and neglect issues” which meant they no longer spent time with most of their biological family apart from their younger brother. Toby, a 33-year-old non-binary person from the UK, also spoke about their experience with emotional abuse, saying: “I can be quite easily manipulated and end up with people who are quite toxic. I can’t tell that they’re toxic.” This was a shared experience of Ronnie, a 34-year-old non-binary person from China, who shared that some of the people in their life were “too indoctrinated into their religion to look past the intolerance it teaches them.” Conflict with family around gender diversity is related to poor mental health outcomes for LGBTQIA+ people (McDermott et al., 2021).

Regrettably, Autistic people are considered to be at greater risk of experiencing abuse and other traumatic events due to our unique cognitive, social, behavioural and communication characteristics (Brenner et al. 2018; Hoch & Youssef, 2020; Mandell et al. 2005). Rumball and colleagues (2020) found that 83% of their Autistic respondents had experienced multiple traumas as reported on the Life Events Checklist (Weathers et al., 2013), including firsthand experiences of natural disaster, physical and sexual assault, and life-threatening illness or injury. The heightened risk of exposure to trauma for trans Autistic people may be associated with minority stress, in which our belonging to different marginalised groups exposes us to external and internal stressors related to our minority status (Bishop-Fitzpatrick et al., 2015; Bockting et al., 2013; Testa et al., 2017). External stressors can include harassment, stigma, abuse, bullying and dependency on caregivers for extended periods (Rose et al. 2011; Sreckovic et al. 2014; Zeedyk et al. 2014). Internal stressors consist of internalized ableism and transphobia, which are reinforced by experiences of external bigotry (Paul et al., 2018). Minority stress and trauma may also account for autoimmune conditions and chronic illnesses in gender divergent Autistic people (Hall et al., 2020), as Sam, a 27-year-old agender person from the UK, explores:

Sam explained that they have been asked about trauma during diagnoses as they were considered potential triggers for their autoimmune conditions – in which the immune system becomes confused between self and non-self-molecules, becoming self-injurious (Cooper & Stroehla, 2003). Sam could not tell if their experience of trauma caused their auto immune conditions or if they happened to occur around the same time as traumatic events in their life. I did not probe Sam for further information to protect their current mental health, however many types of traumas have been linked with auto immune conditions including childhood abuse and neglect, with the risk directly proportional to the frequency, duration and magnitude of early life stress (Dube et al., 2009; Felitti et al., 1998). Exposure to trauma in childhood and early adulthood has been found to influence the onset and development of autoimmune conditions including rheumatoid arthritis (Spitzer et al., 2013), diabetes (Boscarino, 2004) and multiple sclerosis (Spitzer et al., 2012). Sam may have been asked about their experiences of trauma in relation to their fibromyalgia (a chronic pain condition) as 25-50% of patients with fibromyalgia have been found to report an episode of significant trauma within six months of onset (Hodge & Hubbard, 2018). Despite the contentiousness of the causation of autoimmune conditions, Sam’s GP still asked whether they had experienced traumatic experiences around the time of onset.

Sam explained how they used substances in the past to dull their chronic pain. They spoke about their relationship with binge drinking and smoking and how this was linked to their Autistic differences and experiences of Autistic trauma:

Sam explained how their substance use was related to their Autistic and Disabled differences; they used alcohol to soften sensory overload and chronic pain and used outside smoking breaks to escape overwhelming nightclubs. They suggested that it was more socially acceptable to be overly intoxicated than to ask for a sensory break. Many LGBTQIA+ venues and nightclubs can be inaccessible to Autistic people who experience sensory overload from noise, heat, lights and crowds. The Accessing LGBT Spaces study (Attitude is Everything, 2018) asked 128 Disabled people about access to LGBTQIA+ events and venues in the UK. Several Autistic participants from this study said that venues did not have quiet spaces to help with processing, and that they needed to leave the venue completely to avoid becoming overwhelmed (Attitude is Everything, 2018). MacLean (2020) spoke about similar access issues to queer spaces:

MacLean (2020), and the participants in the current study, raise some interesting points about ableism within queer spaces, including sensorially overwhelming nightclubs, the lack of alcohol-free venues and the use of strobe lighting. The inability to access Queer spaces may contribute to underlying mental health conditions of trans Autistic people based in isolation, loneliness and lack of community (George & Stokes, 2016; Van der Miesen et al., 2018). Experiences which were explored by participants within the second theme: relationships and socialising.

Theme 2: Relationships and socializing

Despite mental health issues occurring throughout participants stories, these issues were part of larger, more complex personhoods. Many of the participants spoke about the great love and validation they felt in their close relationships, especially those they had with other Autistic people (Kim, Anthony, Toby and Derek). Autistic adults have been found to interact with other Autistic people more readily than they do non-Autistic people. Seeking out similar others, with whom we share an identity and culture, makes it easier for us to interact in ways that support and champion our needs and interests (Morrison, et al., 2020). Relationships between trans Autistic people can include queer platonic relationships and chosen family, often created in lieu of being connected to our biological families. Toby (a 33-year-old non-binary person from the UK) spoke at length about their connections with others:

Toby talked about the connections they have made with others, they used the phrase ‘warm bath’ people, in reference to Parson’s (1959) theory which suggested that a man coming home from work could sink into his family like a warm bath. It was interesting that Toby and their friends decide to use this phrase as Parson was coming from a patriarchal perspective, which assumed a working husband and a stay-at-home wife with several biological children (Parson, 1959). Toby says they have started to create their own chosen family of ‘warm bath’ people in which they can find total comfort and validation. Queer individuals often create family structures separate from their biological families, due to estrangement after coming out about their queer identities, or because they do not identify within normative ideas of the ‘nuclear family’ (Cassidy, 2022; Gutierrez, 2020). Toby wanted an atypical family structure, but they were still working towards accepting this. They suggested that one of the biggest issues towards this goal is recognition and validation from people outside of their chosen family. Chosen families are not always there to replace biological families, they are simply another way of creating and sharing kinship and love (Weston, 1997). Issues with validation, isolation and belonging are faced by many trans and / or Autistic people as many experience estrangement from the people who raised them (James et al., 2016; Montano et al., 2018). Critically, ‘safe people’ are not always those in close familial relation (Davidson & Henderson, 2010). When talking of their familial aspirations, Toby explained:

Toby said that they related to polyamorous relationship styles despite struggling with their mental health when in romantic partnerships. Toby had strong relationships with their friends and felt that they did not experience friendship in the same way most others do. They suggested that they would like to be part of a queer platonic non-monogamous relationship (a ‘unit’ or polycule) and they wished for that to be respected in wider society. Living in a polycule could include a person partnering with multiple people, a couple dating a third person within a triad or four people in a relationship together as a quad (Sheff, 2013). These relationships would not need to be romantic or sexual in nature. Queer platonic and / or polyamorous relationships can be a firm basis for communal living (Bertilsdotter-Rosqvist & Jackson-Perry, 2020). Sam (a 27-year-old, agender person from the UK) spoke on their aspiration to live communally:

Sam explained the difficulties that they and their friends experienced simultaneously across the UK and the wider World. They said they aspired to create a community living environment in which members could share resources, knowledge and skills, so that everyone could invest in their community. Trans and non-binary Autistic people could benefit from living communally, as we could be protected from the loneliness, abuse and harm which is still prevalent in many of our lives (McDonell et al., 2022; Jones et al., 2022; Roberts et al., 2015). Community living could also be a protective factor from inaccessible housing and healthcare policy, as well as creating more supportive family structures. As Sam went on to explain:

Sam recognised their thoughts on living in a polycule (in a family with several partners) so they could support each other and help raise any children they had. They spoke about coming from a large family and how that had benefited them as a child. Sam and Toby seemed to share similar familial aspirations, they both were interested in neuroqueer-ing the nuclear family by living a-romantically and asexually with several neurodivergent partners (Walker, 2021). Sam frequently spoke about their friends, most of which were chronically ill, Disabled and / or Neurodivergent. Creating friendships with other Disabled Autistic people was a common theme amongst participants:

Anthony, Toby and Robin explained being innately drawn to other Neurodivergent people, both before and after their own diagnoses. They all described an intrinsic ability to recognise similar others to make sustainable friendships with. Autistic people often benefit from relationships in which our atypical ways of being and communicating are accepted and appreciated. We can discover immense joy and purpose in our Autistic communities, finding support, safety and validation from similar others (Botha et al., 2021a; 2021b; Sosnowy et al., 2019). Kim, a 50-year-old non-binary person from the UK, spoke avidly about how they made connections at a yearly Autistic learning and social space:

Kim has created relationships and connections with other Autistic people, including her wife (“my wife is also non-binary and Autistic”) and attends Autistic and Neurodivergent specific groups and conferences. She described having issues with establishing and sustaining relationships before she realised she was Autistic – she was diagnosed in her early forties – but now frequently accesses Autistic-only groups and spaces, making it easier for her to connect with others. Similar was experienced by Ronnie, a 34-year-old non-binary person from China:

Engaging in spaces which cater for Autistic people’s needs can help create feelings of belonging and social connectedness which often does not exist in inaccessible, non-Autistic environments (Botha et al., 2021a). Kim and Ronnie shared that they both had very few friends before joining these online and in-person groups. Unfortunately, it is common for Autistic trans people to feel isolated due to access issues to events and groups, and individual and systemic ableism and transphobia (MacLean, 2020; Quadri, 2022; Rees et al., 2022). Fortunately, spaces such as Autscape and social media groups online, appreciate that many of their members are LGBTQIA+ (Barnett & Maticka-Tyndale, 2015; Brown, 2016; Bush, 2016; Walsh et al., 2018) and have created spaces specifically for queer Autistic people, as Kim went on to explain:

Kim talked about the over-representation of Autistic people within the LGBTQIA+ community including how she was unaware of the significant overlap before attending Autscape. Research on this area has found that Autistic adults are 8 times more likely to identify as non-heterosexual than their non-Autistic peers, with Autistic men being 3.5 times more likely to identify as bisexual than non-Autistic men (Weir et al., 2021). Similarly, 6.5% of Autistic adolescents and 11.4% of Autistic adults said that they wished to be a different gender than the one they were assigned at birth, compared with just 3-5% of the general population (van der Meisen et al., 2018). Medical recognition of autism and gender dysphoria and divergence mark highly insightful moments for exploring identity – allowing people to radically redefine queerness by challenging normative notions of ‘the self’ (Galvin, 2005). This redefinition may explain the apparent over-representation of Autistic LGBTQIA+ people. Some participants spoke about the overlap of Autistic and queer identity, including Micky (a 25-year-old, trans masculine non-binary person, from the USA) who said “being trans and Autistic is a very common thing […] there’s a significantly higher rate of trans Autistic people.” Although Kim seemed less knowledgeable about this intersection she appeared pleased about attending the LGBTQIA+ group at Autscape and has kept in contact with some of the people she met there.

Outside of Autistic and trans specific spaces and events participants explained their difficulties in socialising in group settings. Some spoke of experiencing social anxiety especially when meeting new people, as well as the difficulty of creating and maintaining new relationships:

Greg, 25, trans man, USA.

Derek, 20, trans man, UK.

Anette, 27, non-binary queer agender, France.

Derek, Greg and Anette all spoke about how difficult it was to make friends due to their different social, communication and sensorial needs. Derek reflected that he had niche interests which rarely followed those of others his age. All three participants spoke about choosing their hobbies, interests and own company over that of socialising in large groups. They all appeared interested in connecting with others but would prefer to do it one-to-one, online or around their specific interests. These participants referred to their social anxiety around meeting new people and socialising in large groups as did Toby, a 33 non-binary person from the UK:

Interestingly, Toby spoke about how they feel uncomfortable in all social groups, whether they were socialising with other Autistic people or non-Autistic people. They said that this was based in trauma around going mute in previous group situations. They said they felt embarrassed when losing their ability to speak and much preferred one-on-one social situations. This may also explain why Toby benefitted from being given the interview questions and prompts beforehand, as they were able to write down their answers and read them out loud if and when needed. It is this form of self-knowledge and adaptation which formed our conversations around future aspirations.

Theme 3: Aspirations and their potential access issues

All participants shared their future aspirations which included creating a chosen family and raising children (Derek and Micky) furthering their medical transition (Anthony, David and Micky) and finding more suitable work (which I shall explore further in Theme 4). There were several obstacles to these aspirations, namely inaccessibility of gender identity healthcare, lack of support from medical professionals and absence of work accommodations. Long term relationships, including communal living and creating a chosen family, were an aspiration of Derek, Micky and Toby. Derek (a 20-year-old trans man from the UK) showed an interest in adopting or fostering children:

Derek spoke about choices around fertility provisions, including whether to freeze his eggs, due to the potential infertility issues which can occur during hormone replacement therapy (HRT) (Strang et al., 2018a). He explained that he may adopt or foster children in the future but was disinterested in carrying or birthing a child. Fertility-preservation is a major decision for transgender and non-binary people who undergo HRT and / or gender affirming surgeries. Currently, there is a dearth of data on testosterone therapy on future fertility, therefore an optimal time to pursue fertility perseveration has not yet been established (Douglas et al., 2022). The data on live-birth rates for preserved eggs is also minimal and the process for obtaining eggs is intrusive and may cause gender dysphoria and distress to patients (Douglas et al., 2022; Mattawanon, et al., 2018).

Micky, a 25-year-old trans masculine non-binary person from the USA, showed similar interest in creating a non-biological family: “the main thing I know is when I’m older is I would like to be able to foster and adopt kids”. At the time of interview Micky had been on HRT for 3 months, he said that he would like to be on testosterone for another two years before he makes any decisions on additional gender affirming care, including fertility preservation. Some participants wanted to have children, either biological or adopted, and some were disinterested in having children at all. These familial aspirations, or lack thereof, echo the findings of Strang and colleagues (2017) who found that over half their participants wanted to have children (either biological or adopted) and a third were either disinterested or unsure if they wanted children. Most of the current participants were happily living in non-typical family structures including living alone, living with animals or living with a partner and their ‘fur baby’ (their cat).

Various participants spoke about their gender affirming healthcare goals, including “top surgery” (Anthony, 33 trans male, Australia; Greg, 25, trans man, USA) and “transitioning almost fully with the exception of bottom surgery” (David, 21, trans man, USA). Many participants described gatekeeping around gender affirming care due to their autism diagnoses:

Anthony, 33, trans male, Australia.

Micky, 25, trans masculine non-binary, USA.

Anthony and Micky described the issues of finding medical professionals who will take them seriously as Autistic trans men and non-binary people. This gatekeeping is informed by prejudice and misinformation of professionals, who often assume that Autistic people are unable to understand gender (Dale, 2019; Hillary, 2020). Much research on trans Autistic prevalence rates proposes that gender diversity is related to Autistic ‘social deficits’, based on clinical definitions which use inflammatory language to describe Autistic characteristics (Perera et al., 2003; Kallitsounaki & Williams, 2020; Stagg & Vincent, 2019; Turban, 2018). The history of Autism research shrouded in ableist and transphobic language and ideologies, means that many Autistic people are left unsupported simply due to our neurology.

Experiences shared by participants, highlight the consistent gatekeeping Autistic people experience when trying to access gender affirming healthcare – showing how HRT and other medical interventions are often deemed redundant, or dismissed as an ‘obsessive’ Autistic trait (White, 2016). Participants who were engaging in gender affirming healthcare gave recommendations to improve access:

Scott, 31, man, South Africa.

Yeah, so in terms of healthcare, I think my aspirations are just to be listened to and taken seriously. And have my gender identity recognised, I guess.

Toby, 33, non-binary, UK.

Interestingly, despite living in different countries, Scott and Toby made similar suggestions to improve professional knowledge around the intersection of being gender divergent and Autistic. Unfortunately, at present, patients must efficiently self-advocate for both their autism diagnosis and gender identity healthcare due to a dire lack of specific guidelines for professionals (Strang et al., 2021). Participants from previous studies, suggest that general practitioners need to improving their knowledge on the intersection of neurological and gender divergence, as well as how to access gender identity healthcare (Milne, 2021).

Navigating affirmative gender healthcare is complex and executively demanding, patients need to be able to plan in the short and long-term, organise various appointments, keep up with correspondence and admin, whilst performing complex problem solving around an issue which is highly emotional (Strang et al., 2021). This process can be more difficult for Autistic people who often have different ways of organising and understanding time and information, as well as regulating and communicating our emotions (Bervoets, & Milton, 2021; Jurek et al., 2019; Zdankiewicz-Ścigała 2021). This is complicated further by additional administration and bureaucracy within privatized healthcare. Two participants spoke of the issues with privatized healthcare in the USA, suggesting it would be best for all citizens to be able to access gender affirming healthcare regardless of financial status:

I would like everyone in the U.S to have health insurance like universal health insurance. So, I’d love to bully the healthcare system to do that.

Robin, 26, non-binary trans masculine, USA.

My dreams right now are to get top surgery (which I have been putting off because it’s expensive and hospitals are scary) and to be financially stable.

Greg, 25, trans man, USA.

Despite living outside of the USA, Anthony (a 33-year-old trans man from Australia) had similar issues with financing different therapy sessions due to uniformed psychiatric professionals:

These professionals stopped caring for their patients due to their lack of knowledge and bigotry. Greg’s counsellor had referred him to another practitioner and although they were well-intentioned they were not very helpful. Even when referrals go well they add unnecessary financial and emotional pressure to Autistic trans and non-binary patients. Related issues were raised by a participant in the work of Violeta and Langer (2017) who said that her first therapist was ill-equipped to address her concerns, and this meant she disengaged from mental health care altogether. Regrettably, many transgender Autistic people experience professional ignorance, often after navigating the complex steps to access and having been on long waiting lists (Rachlin, 2020). Problems with waiting times are an issue across the UK, USA and Australia. The Gender Identity Development Service (GIDS) in the UK was rated ‘inadequate’ in January 2021 (Quality Care Commission [QCC], 2021) due to having over 4,600 people on their waiting list, with a wait time of at least two years for the first appointment. Many people on these waiting lists are vulnerable and at risk of self-harm however, staff are unable to effectively assess risk due to their increasing caseloads (QCC, 2021).

The current participants were consistently struggling with medical and mental health professionals, with regards to access and how they were treated. All the participants experienced some form of gatekeeping – from autism diagnosis due to being trans, or gender affirming healthcare due to being Autistic. The most cited issue was a lack of professional knowledge, shortage of funding or insurance coverage, inaccessible administration (such as having to use the phone to make appointments with no contact alternatives) and explicit transphobia, ableism and autisphobia. Unfortunately, these access issues are unlikely to improve whilst transgender healthcare services continue to experience higher global demand (Cheung et al., 2018) – including GIDS who saw a referral increase from 1,408 in 2015-2016, to 2,728 in 2019-2020 (GIDS, 2020). Gender identity healthcare shall continue to be inaccessible as waiting lists grow longer, bureaucratic processes become more complex, and treatments become more expensive. Organising finances is a problem for Autistic people who continue to have significant access issues to employment. We are less able to engage in private healthcare, leaving us at the mercy of national initiatives which often do not cover gender affirming healthcare (Hendricks, 2010).

Theme 4: Employment and education

In the UK, just 21.7% of Autistic people are in employment, being amongst the lowest employment rate amongst Disabled people in Britain (Office for National Statistics [ONS], 2020). Over a third (34.6%) of Disabled people in work in the UK, between the ages of 16 and 64, work part-time compared to a significantly lower 22.9% of non-Disabled people (ONS, 2020). Things are similarly difficult for transgender people who, in the USA, are twice as likely to be unemployed and make 32% less money per year than their cisgender counterparts (Baboolall et al., 2021). Despite higher prevalence of transgender identities in the Autistic community and autism within gender divergent communities (Bush, 2016; George & Stokes, 2016; Walsh et al., 2018) there remains a lack of empirical research on employment rates of trans Autistic people.

Experiencing multiple levels of minority stress (Bishop-Fitzpatrick et al., 2015) suggests that working environments are challenging for neuro and gender divergent people. Workplaces can be inaccessible for many reasons including (but not limited to); unclear work expectations, over-stimulating work environments, bullying and harassment, and feeling unsafe about ‘coming out’ as trans and Autistic (Hart, 2020; MacLean, 2020). All participants spoke about support issues in their place of work whether they chose to disclose their trans and Autistic identities or not:

Work is much harder. Without a diagnosis, I don’t say anything about autism, and often end up with shutdown at the end of the day.

Anette, 27, non-binary queer agender, France.

Ronnie, 34, non-binary, China.

Kim, 50, non-binary, UK.

Toby, 33, non-binary, UK.

Anette explained how she experienced shutdowns – an extreme case of inertia – whilst at work due to being consistently overwhelmed. Owing to not being formally diagnosed Anette felt that their needs would not be taken seriously at work. Ronnie has told their work colleagues that they are Autistic but was uncomfortable about coming out as non-binary due to the political opinions of other staff. They have also overheard ableist jokes and comments made about Neurodivergent people which made them feel unsafe about asking for accommodations. Interestingly, Kim felt comfortable coming out about their sexuality at work but did not feel like it was ‘worth’ coming out as Autistic. She believed that parents of clients would find her being Autistic too difficult to comprehend. Kim also mentioned that being self-employed, she was able to accommodate her own needs and therefore she would not gain anything from being openly Autistic with her clients. Toby was excited after their autism diagnosis, as they felt like they finally knew themselves, but their tutor was less than supportive. Toby reflected on feeling incredulous that someone working in counselling would be so explicitly judgmental and ableist. Similar issues with ableism have stopped Micky (a 25-year-old trans masculine non-binary person from the USA) from being openly Autistic at work:

Micky articulated how they felt much more confident and protected in their rights as a transgender person in their workplace. They said that working at a large corporation – with over 5,000 staff members – made the processes for trans inclusion easier for the company to manage. Inclusive strategies included changing names and pronouns on work documents. Micky suggested that being openly Autistic was a lot more complicated as there was no all-encompassing way to support Autistic people at work. Unfortunately, many employers lack knowledge of Autistic experience and therefore do not adjust the working environment or expectations for Autistic workers (Lerman et al., 2017). This, coupled with workplace bullying and prejudice, use of overly complex bureaucratic processes, inflexibility in work hours and lack of clear communication, means that many Autistic people are unemployed, or underemployed in job roles which do not match our capabilities (Baldwin & Costley, 2016; Lerman et al., 2017; Roy et al., 2015). In the wake of increased explicit transphobia across the UK and USA, it is surprising that Kim and Micky felt more comfortable being open about their LGBTQI+ identities as opposed to their neurology. Being open about either identity within the workplace can put gender divergent Autistic people at real risk of harm, as expressed by MacLean (2020), a transgender Autistic person:

MacLean (2020) explained that he was threatened with being fired if he came out as transgender as his employers suggested that having an openly trans member of staff would ‘negatively’ affect their business. MacLean was fortunate enough to find another job in which his gender identity was respected by his employer and work colleagues. Regrettably, many gender divergent Autistic people struggle with finding and holding down employment due to unknowledgeable and unaccomodating employers (Baldwin & Costley, 2016). As Toby, a 33-year-old non-binary person from the UK, explains:

So, I’ve got quite a transient relationship to jobs in general I tend to work in like two yearly increments in a particular place. And to be honest, I get really burnt out every couple of years and discontent with the work culture.

Toby described a persistent discontentment with workplaces and work colleagues which meant they changed their jobs frequently. Toby was able to move between different workplaces to shield their mental health unfortunately this is not an option for all Autistic people as we often prefer consistent routines and expectations (Van de Cruys et al., 2014). Additionally, there is a certain amount of privilege which comes with being able to change jobs. Black indigenous people of colour, non-speaking or learning-Disabled Autistic people may not experience changing work the same way, especially with the lack of employment support for those with more complex needs (Baldwin, 2016; Gerhardt & Holmes, 2005). Unaccommodated, sensory and social communication differences were also issues faced by some of the participants within the workplace:

I have, you know, I have a lot of sensory issues. So, a lot of workplaces are difficult for me because of things like fluorescent lighting, too much noise other people in the workplace or patrons using strong perfumes or deodorants. I have struggled very much in the employment market, as the jobs I’m most qualified for seem to be the ones that are least suited to me in terms of sensory needs etc.

Anthony, 33, trans male, Australia.

Kim, 50, non-binary, UK.

It’s very hard to find a job like a flight attendant because I lack some social skills that could be important.

David, 21, trans man, USA.

Jay struggled with workplaces in the past due to their sensory issues with fluorescent lighting as well as issues with migraines triggered by particular perfumes. They also suggested that workplaces are too noisy and crowded for them. Anthony felt that he was missing out on job opportunities due to the unaccommodating nature of potential workplaces. David and Kim both found it difficult to get a job or create a career in the way they had hoped. Kim became self-employed so that she could better manage her work environment. The rigidity of the school schedule and having to teach 20 plus children at a time did not suit her needs, despite it being something she was seeking out. At the time of interview, David aspired to be a flight attendant but was finding it difficult to start the process as he felt that he was ‘lacking the required social skills.’

Despite the issues associated with accessing work for Autistic people (Baldwin & Costley, 2016; Lerman et al., 2017; Roy et al., 2015) most of the participants were in education (either full or part time) or in work (either part time or ad hoc). Some were also looking to find work around their creative interests:

Greg, 25, trans man, USA.

Anthony, 33, trans male, Australia.

Greg and Anthony were both at the beginning stages of self-employment. Despite being able to follow their creative interests and talents they were both finding it difficult to “make a living” from them. Ironically, self-employment holds very similar accessibility issues to that of gender affirming healthcare; people need to be able to plan in the long and short term, organize various appointments and manage administration (Strang et al., 2021). Managing all of these entwined work responsibilities can be overwhelming for Autistic people, especially those of us with chaotic organizational skills and social anxiety (Strang et al., 2021). This is perhaps more daunting for those who were engaging in further study and gaining specific qualifications to improve job opportunities. Globally, there has been an increase in Autistic people accessing college and university (Lubin and Brooks, 2021) using our passionate interests, creativity, attention to detail, and desire to learn to our advantage (Gurbuz et al., 2018):

Anthony, 33, trans male, Australia.

I’m planning on study astrophysics and music, and hopefully have a degree in them. Also improve my languages skills.

Anette, 27, non-binary queer agender, France.

I want to go to grad school and get an adult MSW, MPH degree and use that to do some community organising slash counselling stuff that involves research.

Micky, 25, trans masculine non-binary, USA.

Sam, 27, agender, UK.

Anthony wanted to retrain so that he could find more appropriate work, at the time of interview he was still struggling with low wages. Anette, Micky and Sam were planning on going back to further education to gain qualifications to help improve their knowledge and job prospects. Sam was keen to move abroad to experience a different culture whilst still having the structure and support of a university course. They saw university as a great way of making friends and socialising as well as improving their knowledge and work-based skills. Sam had a lot to organize in order to study abroad and they were concerned about transferring their disability benefits and medical interventions over to another country. There has been a steady increase in Autistic people accessing higher education within the UK, with a rise of 77% between 2007 and 2011 (Anderson et al., 2017).

All participants were interested or engaged in work and education, despite facing major barriers within the workplace including transphobia, ableism and autisphobia (Ronnie, Kim and Toby), sensorially harsh working environments (Jay and Anthony), impact on mental health (Anette and Toby) and lack of accommodations (Anette, Micky, David and Kim). Combining formal reasonable adjustments and a safe working environment can allow trans Autistic workers to thrive and add tremendous value to a team (Hart, 2020). However, reasonable adjustments need to be individualized, created by the trans Autistic individual’s personal recommendations for accessibility.

Theme 5: Recommendations for future work on trans Autistic experiences.

Participants were specifically asked about their recommendations for future work on our lived experiences. Past work has dismissed or overlooked the lived experiences of transgender Autistic adults, focusing instead on the opinions of parents, medical professionals and educators (Hannah & Stagg, 2016; Kuvalanka et al., 2018; Mahfouda et al., 2019; Nabbijohn et al., 2019; Littman, 2018). Research would benefit from championing the voices of Autistic people as the experts of our own experiences, instead of relying on non-Autistic others to act as an authority over us. Championing these voices are an important part of making real improvements for future work. Many of the recommendations in the current study focused on talking to Autistic trans and / or non-binary children and adults directly:

Scott, 31, man, South Africa.

Derek, 20, trans man, UK.

Kim, 50, non-binary, UK.

Sam, 27, agender, UK.

By making the information easier to find and access, as well as having people actually part of the communities providing the information.

David, 21, trans man, USA.

These participants recommended that trans Autistic people needed to be included in work around our experiences, following the disability rights movement ideal of ‘nothing about us without us’ (Charlton, 2000). Derek suggested that trans Autistic people should be given more options to engage in research, giving us the option to help educate others from our lived experiences. Kim highlighted the importance of representation especially for young people who are still figuring themselves out. Unfortunately, this representation is undermined by work which preferences the voices of parent and carers over trans Autistic young people themselves. As Sam explained, this focus on parent and family experiences undermines the autonomy of trans autistic young people by talking to people who have supposed authority over our feelings and experiences. Research practices such as these further marginalise the very people it is supposed to be helping. Robin, a 26-year-old non-binary trans masculine person from the USA, recommends:

Robin explained that issues in current research could be circumvented by including trans Autistic people, especially within research leadership roles. He suggested that such work would focus on participant voices viewed through a trans and Autistic affirming lens. Furthermore, centering the experiences of trans Autistic people within research teams and participant pools challenges the pathology paradigm and the outdated and inappropriate language which comes with it. Turning away from work which reduces Autistic and transgender experiences to ‘deficits’ will leave space for research which accurately reflects our lived lives. As Greg, a 25-year-old trans man from the USA, reflects:

Greg suggests that is it not enough to simply create research which explores this overlap, the research needs to explore how to make our lives better through systemic change. He states that researchers need to be better informed to make work which is accurate and actively useful. Scott, a 31-year-old man from South Africa, said that he often feels like he is being tested on instead of researched with:

Scott spoke about his consistent frustration with being treated like an object rather than as a human being, he echoed that Autistic people are not there as educational ‘self-narrating zoo exhibits’ (Shore, 2003, p. 184). Scott reflected that people ‘poke the slime’ within research and support groups due to project leaders being cisgender, non-Autistic and able-bodied. Similar issues can be seen within work which focuses on the experience of non-Autistic parents. Unfortunately, much of autism research, including work on trans Autistic experiences, relies on the reporting of parents and carers or the observation of children by professionals (Pellicano, 2018). Autistic people are often spoken on behalf of within such studies due to the focus on the needs and expectations of the neuro-majority who uphold neuro-normative ideals. Being transgender and Autistic is purely phenomenological – researchers focus on prevalence to understand why we occur as opposed to how we could be supported and valued. Understanding us as whole human beings, who face additional issues due to social power inequalities, will only happen when researchers understand Autistic experience through a neurodiversity paradigm (Walker, 2021). Many of the participants understood the importance of being able to share their whole stories:

Greg, 25, trans man, USA.

Anthony, 33, trans male, Australia.

Sam, 27, agender, UK.

Greg suggested that our stories are not ‘common enough’, he recommended that more people share their experiences online and in print to improve representation. Sam and Anthony appreciated the importance of narrative methods for sharing our experiences and raising awareness. Anthony suggested that representation should be improved in media as well, suggesting that Autistic, especially trans Autistic people, should be typical characters across multimedia. Sam recognized and appreciated the passion I had for my work and that I was also a part of the community I was researching with. Greg, Anthony and Sam all suggested that change can only occur when people’s narratives are heard and shared. Participants also gave recommendations for improving representation within research through recruitment criteria:

Maybe interrogation all ages in the population. And also, seeing in non-Autistic transgender community what they don’t know, to target some question and answer.

Anette, 27, non-binary queer agender, France.

I also would really like to see that include more nonbinary people I have not seen anything that included non-binary people. It doesn’t mean it doesn’t exist, but I haven’t seen it.

Jay, 31, agender, USA.

Sam, 27, agender, UK.

Anthony, 33, trans male, Australia.

All participants gave several recommendations for the current study (which I shall explore in the conclusion) and for future research. Participants wished for different age ranges to be considered, especially within the older ages (Anette and Kim) and many observed that non-binary people were often excluded from research (Jay, Toby and Sam). Sam and Jay both suggested that research on being trans, Autistic and having hypermobile Ehlers Danlos Syndrome (hEDS) would be useful as they, and some of their friends, live at this intersection. Sam had read an article about testosterone easing the chronic pain symptoms of hEDS and suggested to their trans masculine friend that they start testosterone sooner in their gender journey as it may alleviate their hEDS symptoms. Although this intersection was only briefly spoken about it was significant that two out of thirteen participants made this recommendation. Anthony brought up an on-going issue through Western academic research: that many participants are white, English-speaking, well-educated and relatively wealthy (issues I shall address in the concluding chapter). As in all elements of the interviews participants had a lot to offer and reflect on around past and current literature limitations, as well as making recommendations for future work reflecting on our lived experiences.

Limitations and conclusions

This study identified the complex issues as well as the joy experienced by Autistic gender divergent people, revealed by their biographical narratives. Participants spoke on a variety of life experiences including mental health, relationships, employment and future aspirations, as well as recommendations for future research on “double rainbow” experiences. It was critical to reflect on the intersections of participants to understand how they experience minority stress including transphobia (Ronnie, Toby and Greg), family estrangement (Micky), substance use (Sam) and staying ‘closeted’ (Anette, Kim, Micky, Ronnie and Toby). These accounts allow others to conceptualize existing within dominant cis-normative and ableist structures, demonstrating the need to continue sharing narratives that explore the complex intersections of neuro and gender minority (Cain & Velasco, 2020). However, focusing on the adversities of trans Autistic people would merely have added to the tragedy narrative of our lived experiences (Runswick-Cole, 2016). Therefore, it was important to hear accounts of joy and happiness including creative and specialized interests (Anette, Derek and Greg), chosen family (Derek, Micky, Sam and Toby) and future aspirations (all participants). Giving a holistic account of our experiences allows us to neuroqueer research which explores our lived lives; our experiences are so vast, so too should be the research about us.

I hypothesised that participants would identify with the neurodiversity paradigm (Walker, 2021), in which their being Autistic was neither good nor bad, it just was. This was reflected in participants intimate accounts of great sadness and joy, as well as how inaccessibility across environments made life more difficult for them (Kim, Derek, Micky and Sam). Participants shared important insight into the current state of both Autistic and transgender discourse and policy, some participants also had a good knowledge of current research (Anthony, Derek, Sam, Scott and Toby). As hypothesised all participants had strong recommendations for future research on “double rainbow” experiences, including direct research with gender divergent Autistic people and research being led by people with lived experience.

Participants’ individual experiences provide a fascinating example of how our narratives interlink with each other and within wider societal and cultural contexts (Sarbin, 1986; Cain & Velasco, 2018). There were many shared experiences between participants despite living in different places across the world: China, Australia, France, South Africa, UK and USA. Shared themes suggest an overall lack of professional knowledge and accommodation, as well as consistent transphobia and autisphobia within systems across the world. Indeed, ‘gender critical’ discourse is rife throughout the USA and UK, which is reflected in the policies explored in the introduction. Another shared theme suggests a need and preference for trans Autistic people to create chosen family, with a predilection for communal living with other queer, Disabled and Neurodivergent people (Toby, Sam, Robin and Anthony). However, generalisations are difficult to create from small participant pools, especially given the vast differences between Autistic people’s lived experiences (Mendes & Maroney, 2019).

Recruiting from across different countries (see figure 1) meant I was unable to fully contextualise or emplace these lived experiences within policy frameworks. Furthermore, using a small sample from across different countries, meant important intersections of the “double rainbow” were overlooked, including trans and Autistic experiences of hEDS (Sam and Jay). The smaller sample size – and my positionality – may also explain the over-use of white, well-educated, middle-class participants (something Anthony and I explored during his interview). I enlisted participants through online trans, LGBTQIA+ and Autistic spaces which may be unintentionally unsafe for Black, indigenous people of colour (BIPOC) due to being predominantly run by white admins and moderators. Intersectional spaces likely exist online although I, as a white person, justifiably do not have access to them. Having an ethnically diverse sample is an age-old problem within research which continues to be a tricky bias to overcome (National Academies of Sciences, Engineering, and Medicine, 2022). Future studies in this area should include greater ethnic variability of participants and would benefit from BIPOC researchers in leadership positions.

Despite recruiting people from different countries, the support resources listed in the participant information sheet all pertained to UK charities and helplines. Future research would benefit from recruitment from a specific country or sharing information of worldwide charities and support services. Fortunately, whilst reflecting on this during an interview, Micky shared a list they had created of USA based helplines which they were happy for me to share with other participants. Sharing of personal stories and resources in this manner reflected the very nature of this work, as one of mutual bonding which results in the growth of both people involved (Atkinson, 1998). Participants and I reflected on shared issues together, interweaving our identities into the wider context of society (Plummer, 2001; Sarbin, 1986). We shared information on ableist and transphobic celebrities (Micky and Sam), compared UK and USA gender identity laws (David, Greg, Micky and Robin) and reflected on how we engage with others in Autistic and / or LGBTQIA+ spaces (Kim, Ronnie and Toby).

Interestingly, three participants (Anthony, Greg and Sam) recommended that more trans Autistic people should share their stories to help spread awareness, acceptance and inclusion. Unfortunately, systemic transphobia and ableism has rendered trans Autistic people all but invisible in research about our experiences (Duke, 2010). That is why it was important for me, a trans masc non-binary Autistic person, to lead work with other trans Autistic people. Through storytelling we took back agency over our individual and community narratives, asserting our place in the world (Becker, 1997). Using the neurodiversity paradigm allowed us to explore and share experiences of oppression and support needs as well as joy, comfort and authenticity. Refusing to use the pathology paradigm allowed me to create meaningful work with participants not to them (Shore, 2003). Through this direct engagement with trans Autistic people, the current study serves as a model for future work to include our voices in any investigation regarding our experiences. Sharing these accounts makes for wider understandings of transgender and queer experiences and the disciplines of Critical Autism and Disability Studies. Reflecting on our experiences as people who live under the “double rainbow” can enhance the colours for all.

I’m happy to share my reference list for this, email: autistic_ltd@outlook.com