Gender Issues for Autistic girls

This article first appeared on the Autism Hampshire website. It is reproduced here with kind permission of the Author.

Advice for Parents with Gender Atyptical Daughters

 I write this article from the perspective of an autistic female who used to struggle with gender issues myself as a child. I hope that my own experience will help parents whose daughters (diagnosed autistic or just suspected) are going through similar issues to know how to best support them by understanding the issues surrounding autism and “gender dysphoria” (also known as “gender identity disorder”). After all, knowledge is power.

Background

Over the last few months, stories and articles about gender issues have been filling the newspapers, from accounts by people who transitioned to living life as the opposite sex, including taking cross-sex hormones and surgery, to reports from professionals about the Gender Identity Development Service (GIDS). Of particular concern are those regarding the Tavistock Clinic in London, the only gender identity clinic for children with “gender dysphoria” in the UK. This service aims to help hundreds of children a year with gender issues, including referral for puberty blockers to stop the development of secondary sex characteristics, and later cross-sex hormones (also known as gender-affirming hormones). However, recently, the Clinic has been under fire for not adequately informing parents and children of the permanent implications of treatment, and for using medications that are not licensed for this purpose and carry serious risks. Parents are now taking legal action against the Tavistock Clinic with concerns about puberty blockers being given to their children without their consent, despite their children being minors in the eyes of the law, including the mother of an autistic 15-year-old, who noted serious mental and emotional issues in her daughter long before she started talking about becoming a boy.

The situation is therefore a troubling one for any parent, but parents of autistic children should be even more vigilant. It has emerged that a disproportionate number of autistic children are among those being referred to the Clinic, which is not being taken into account by those proposing treatment, as you will find with most therapy. The other worrying statistic is that around 75% of the total are biologically female, when in the past, the numbers were both lower and equal between the sexes. The reasons for this are mostly unknown, but many professionals have looked to environmental explanations for the difference, including social trends, gender roles and influence from the media.

With regards to the media and social trends, there is no doubt about it that children and young people have been exposed to “LGBT issues” far more now than we were at the same age. Many people consider this to be a way of normalising such behaviours and lifestyles to combat prejudice and discrimination, as was the aim of the Equality Act 2010. However, there is also the risk that children will come to think they are “transgender” when their gender issues are based on something else entirely. We see this in the cases in the media, where more and more people speak of “transgender regret” and have tried to “de-transition”. Trans activists have often labelled these people as only thinking they were “trans”, but actually weren’t. If these people were wrong, though, that proves that external influences were to blame, and contrary to what Lui Asquith from Mermaids[1] believes, you can make someone “trans”. One such “detransitioner”, Charlie Evans, spoke to the BBC recently on the matter: “Most of us are same-sex attracted. Most of us identify as either lesbian or bisexual and a lot of us are autistic”[2]. Charlie speaks on the behalf of girls and women, and that is my focus here.

Gender Roles

It has become the norm to refer to children who do not conform to the gender roles of their biological sex as “transgender”. These gender roles, though, are not dependent upon one’s experience as a boy or girl, but on how society expects boys and girls to behave, which differs between the societies in which children grow up. Societal expectations may be influenced by perceived social class as well as culture. These expectations also differ across generations. Gender roles, therefore, are not always easy to determine. For autistic children, this is a minefield.

There are a number of stereotypes that seem to feature across all societies to some extent. There is a demand for girls to be interested in how they look and dress, and for boys to engage in rough games and never cry. Girls, therefore, who are more interested in typically male play patterns, who are not concerned with how they look, and who are logically-minded and not particularly emotional are made to feel that they do not fit. Likewise, sensitive boys, who would choose to play with a doll over a car, or just sit quietly with a book, are feminised, called “sissies” or told they are “gay”. All this has nothing to do with the individual, but on how the individual perceives him or herself in the light of how society treats him or her. The important thing to remember is that there is nothing wrong with these children. The world needs lots of different types of people, both intellectual girls and sensitive boys. They are the doctors and researchers, and nurses and carers of tomorrow, and by denying these children the right to be who they truly are, society robs them of their chance to find true happiness, a happiness that will not be found in taking cross-sex hormones and physically changing their bodies.

Autism and Gender

I assume that most you reading this know something about what autism is and how being autistic affects a person. If not, please refer to Autism Hampshire’s “What is Autism” page. Diagnosis is usually on the basis of what is known as the ‘triad of impairments’: Language and Communication; Social Emotion; Sensory Perception. Various genetic and environmental factors seem to affect how autism presents, but the research suggests that whether or not a child is autistic is determined in the womb. Autism is often linked to higher levels of testosterone, which affects how the brain develops. Many autistic people can function pretty well in society, but due to differences in social emotion, they are known to be too trusting and suggestible. This is true of all children to some extent, but even more so of autistic children, and adults too are said to be gullible and easily manipulated. Even as a young adult, I need my parents’ help with making decisions because I am naturally too trusting of people in authority, falsely believing that they always have my best interests at heart, and blithely accepting that some kind of qualification makes them an expert.

Concerning gender, the majority of children diagnosed with autism are male. It is also apparent that autistic girls’ brains have a very similar structure to the brains of boys, both autistic and neurotypical. This suggests, then, that it is not just harder to diagnose girls because they are better at masking, but that there actually aren’t as many of them in the first place. Personally, I know far more autistic males than females, regardless of whether they have received a diagnosis or not. It is hard to find research into the ways autistic girls differ from neurotypical girls, but as well as differences in brain structure, it has been found that autistic girls are more likely to experience puberty delays, and the prevalence of Poly Cystic Ovarian Syndrome (PCOS) is higher in autistic girls than the general population (which is about 1 in 10). PCOS causes small, usually benign cysts to develop on the ovaries, which results in hormone imbalance, including higher levels of testosterone, as well as delaying puberty and making it harder to get pregnant due to irregular menstrual cycles. PCOS, like autism, is present from birth, and both are associated with higher foetal testosterone. Furthermore, women with PCOS are more likely to be autistic (Orvos and Schwartz, 2018). Research also demonstrates that autistic girls are more likely to experience tomboyism and/or engage in typically male play[3].

“Transgender” issues

It is easy to see, therefore, how easily something perfectly innocent, relating only to the differences between autistic children and their neurotypical fellows, can have some children believing that they must be “transgender” and experiencing “gender dysphoria”, as well as mental health conditions (experts are divided on whether “gender dysphoria” is a mental health condition), including depression and suicidality. It should not be ignored that many of the “detransitioners” are autistic, nor that suicide rates have been seen to go up after starting treatment to “transition” not down, while “gender dysphoria” does not improve, along with other mental health conditions. Most important, though, are the statistics that show that after the onset of puberty, 80-90% of children with gender issues become comfortable with their biological sex.

This is my story:

I wasn’t diagnosed as autistic until I was twenty-five, but as a child I had a global developmental delay as well as delayed visual maturation. It was thought that the two together slowed my development causing typical markers to be later than for most children. For my vision I was statemented (the old system now covered by the Education, Health and Care Plan), and I had support at school. What we didn’t know at the time is that all this is very common with autistic children, as Asperger’s Syndrome wasn’t diagnosed in the UK until 1994, and it was still only the “severe” cases that would be considered. Most people just thought my development was slow because of my vision.

As a child, I had little interest in dolls or typical girl play and would assume a male role when playing with my siblings or other children. My brother wasn’t born until I was nearly four, but even before this we had trains to play with and whatever you chose at playgroup and preschool. I do remember getting upset though whenever my brother received a present for birthdays and Christmases that I wanted, and I had the same as my sister. Like all young children[4], I had no concept of gender. I was a boy when I dressed in boys’ clothes and a girl when I dressed in girls’ clothes. More and more though, I wanted to dress in boys’ clothes. I had lots of hand-me-downs from my male cousin, and only wore dresses at church and sometimes at school. This was definitely more about comfort though, as I didn’t purposefully keep my hair cut short until I was quite a bit older, happy to role-play without caring what I looked like. I had a vivid imagination even at that age, and quite a flair for story-telling.

Like most autistic children, I did not have many friends. I was generally liked, but I did not make any special connections with many others. Among these was a girl my own age, with whom I am still good friends. We liked to play The Famous Five together, and I was always George, the tomboy, who liked to look like a boy and be mistaken for one. This was me too. I didn’t tell anyone I was a boy, but I did enjoy it when people mistook me for one and called me “he”. My dad used to joke that he had three children: one of each. No-one had any concept of gender non-binary then. It was just an amusing way of identifying his tomboy. I didn’t mind. I was usually too well engaged in my own thoughts to worry what other people thought of me, or even to worry what I thought of me. Like many autistic girls, especially those good at masking, I modelled myself on different people as I grew up. I am sure that my brother and my male cousin influenced me to some extent, and my parents, who were both educators, were definitely the reason I wanted to go into primary teaching. My brother is nearly four years younger than me, while my sister is only twenty months older, and yet I was still more inclined to play with him. We liked the same games and had some of the same interests. I was, for all intents and purposes, a tomboy.

Now, society would label me “transgender” or as having “gender dysphoria”. Society is wrong. I wasn’t “transgender”, and my parents never tried to confuse me by treating me like a boy. I was allowed to wear boys’ clothes sometimes – not to church, school or swimming – and they correctly regarded my tomboyism as a natural phase, or even a game that many girls go through when trying to find where they fit in. This is particularly common with autistic girls because of their typically-male traits: logical thought, advanced cognitive development alongside delayed emotional development, stubbornness, disinterest with how they look, and so on. No wonder then that some people refer to autism as the “extreme male brain”.

I was nearly sixteen when I started puberty, and by this time, I had left behind any desire to present as a boy. I grew out my hair at around eleven, often wearing it in two plaits. My interests, however, did not change, and neither did my personality traits. I just came to realise they weren’t exclusively boy traits. I still liked to play with trains, and I spent a lot my time role-playing various characters, now girls, but not typical girls – those who stood out a bit, like me. I think I presented as a normal, albeit quirky little girl at school, while at home, I was just myself, living in my own little world. Mum used to say that the house could burn down around me, and I wouldn’t notice.

At thirteen, I moved from the local state school to an all girls’ private school, where my dad taught. I wasn’t flourishing academically and had experienced quite a bit of bullying from people who didn’t like that I stood out. At my new school, things were different. It was a safe place to be no matter how quirky you were. For a long time, I then modelled myself on Harry Potter’s Hermione Granger, the smart, geeky friend of two boys. I recognised my intellect around this point, and I saw myself in her. It is never stated, but I think she is probably autistic too.

My Asperger’s diagnosis came after a period of depression at university. I made some unfortunate friendships, and without my mum to support me, I didn’t know how to navigate this new world. I received some CBT counselling, which made my anxiety and depression worse, and the psychologist realised from this that I was probably autistic. I scored high forties on the AQ, and later received a diagnosis privately due to the long wait times. Suddenly, I realised that I wasn’t odd or different, but the textbook case for Asperger’s syndrome. My whole childhood made sense, and since then I have learnt more and more about myself. I am now happy being the smart, geeky girl who likes trains and reads science and philosophy just for fun.

More recently, I began to have problems with my weight, where I had bulked up lots of muscle running and cycling that I couldn’t seem to lose. I still looked quite slim, so this was concerning, and with rheumatoid arthritis (diagnosed when I was twenty), I was at risk of damaging my joints due to the extra weight. The doctor tested me for various things and have now confirmed the likelihood of PCOS. Women and girls considering taken testosterone for “transitioning” should know that just the small amount of extra testosterone I have as a result of a natal condition has caused all kinds of issues. For me, these included: difficulty losing weight, increased muscle bulk in excess of what my small frame requires, unwanted hair growth, irregular and sometimes missing periods, delayed puberty, and if I were to try, likely difficulty with getting pregnant. It is possible that my symptoms could be controlled with medication, but weight loss will remain problematic. Even starving myself for days at a time has never made any difference. Purposefully taking testosterone therefore is likely to cause even greater problems. Even girls who feel like boys must understand that their bodies are not designed to cope with more than a small amount of the male hormone, on average seven to eight times less than boys. No-one knows how great a risk this might be.

Advice to Parents

In order to highlight how messy and confusing these issues are, I would like to take a moment to consider the DSM-5 entry on gender dysphoria. Diagnosis for adults is made on the basis that two out of six apply, and for at least six months:

1. A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics

2. A strong desire to be rid of one’s primary and/or secondary sex characteristics

3. A strong desire for the primary and/or secondary sex characteristics of the other gender

4. A strong desire to be of the other gender

5. A strong desire to be treated as the other gender

6. A strong conviction that one has the typical feelings and reactions of the other gender

You may be reading this and feeling that some of this might apply to you. Well, right now, at least two apply to me, and yet I do not have any desire live my life as though I were male. Diagnosis for children, then, is made on the basis that six out of eight of the following apply:

• A strong desire to be of the other gender or an insistence that one is the other gender
• A strong preference for wearing clothes typical of the opposite gender
• A strong preference for cross-gender roles in make-believe play or fantasy play
• A strong preference for the toys, games or activities stereotypically used or engaged in by the other gender
• A strong preference for playmates of the other gender
• A strong rejection of toys, games and activities typical of one’s assigned gender
• A strong dislike of one’s sexual anatomy
• A strong desire for the physical sex characteristics that match one’s experienced gender

I can honestly say that for most of my pre-teens, criteria one to six applied to me. If this had been now, and I had gone to the doctor with these issues, I would have been diagnosed with gender dysphoria, and might even have been open to the idea of “socially transitioning”. I wouldn’t have known what I was doing. It would just have seemed like a good way to get to wear the clothes I wanted to, play with the toys I was interested in, and be treated like the boy I wanted to be. All I can say is that I am grateful nobody had thoughts like this in the nineties. It would have ruined my body and my life. I would later have “detransitioned” and felt just as awful about what I had become as those currently in the media, and I may never have really understood why I felt the way I did, or why I went through with it. It is no wonder that many professionals are sceptical of a diagnosis for gender dysphoria being made at all, and huge numbers have recently left the clinics due to the poor care being given to children.

I therefore offer the following advice to parents whose daughters are experiencing the same feelings and want to “transition”:

• Understand that tomboyism is not a sign of gender dysphoria. The two are quite separate. Many people deny that gender dysphoria is a phase, but tomboyism almost certainly is
• Challenge stereotypes that suggest that girls should not be into trains, lack emotion or have more interest in books than looks
• Remember that autistic girls are not usually very girly. I know quite a few autistic girls and women and they are not stereotypical. Most of them wear baggy clothes that are comfortable, they don’t wear makeup unless there’s a good reason, they don’t really worry about hairstyles or fashion, and their interests tend to be in things that involve high levels of physical or mental stimulation.
• Do not think that autism is unrelated to gender issues. This is something we’re hearing a lot from “transgender” activists, but I can tell you as an autistic person, it is not true. Autism affects both the person and how he or she sees the world. The female brain develops in the womb to be much more like the male brain, and so it shouldn’t surprise us that autistic females “feel” more male, have more male interests and demonstrate more male traits. In the high proportion of females who also have PCOS, of course, this feeling is heightened. Testosterone does affect the way a person feels, especially females, who are more sensitive to its effects.
• Affirm your daughter as she is and keep reassuring her that she is not weird and does not need to change. Girls can be clever and strong and brave just as boys can, and they don’t have to wear dresses or makeup.
• Talk to your daughter about how she is feeling. It may be that someone has said something to her that has affected how she views herself. Children, especially autistic children, are very suggestible. If you put ideas into their heads, they can fixate upon them. They are also very vulnerable and cannot as easily head off any kind of attack.
• Research shows that that autistic people are more likely to be same-sex or bi-sex attracted than the general population. It might be that your daughter has mistaken herself for “trans” when really, she is just more attracted to girls than boys, or even that she’s not attracted to either.
• If she does come out as “transgender”, do not let yourself be bullied into letting her go onto puberty blockers. Giving consent to a treatment that may involve a lifetime of hormonal treatment and highly invasive surgery and which has little evidence as to its risks and outcomes is a difficult situation. It is vital that the clinic do not ignore autism or mental health factors that may be affecting thoughts and behaviour. Consideration also needs to be given to the fact that Autistic girls have lower emotional maturity for their age than neurotypical girls which is likely to impact on their ability to give meaningful consent – EQ scores are significantly lower, as usually feature in a diagnosis.
• Do not fall for the belief that letting your daughter “transition” will solve all her problems. There is a wealth of longitudinal research on “gender reassignment” cross-culturally, as to how people cope much further down the line. As well as suicide rates going up, there are also greater instances of psychiatric hospitalisation. The sad truth is that a girl can never become a boy. She can only look like one. Biologically, she is still completely female, her chromosomes unchanged. As McHugh explains: “it proves not easy nor wise to live in a counterfeit sexual garb.” The other lie we sometimes hear is that she is only female because that gender was “assigned to her at birth”. Gender/sex is not assigned at birth. It can be determined chromosomally and physically in the womb. You were not wrong when you learnt that you had given birth to a daughter. The exception is of course inter-sex, where there is a mismatch between genital appearance and chromosomes, but this is extremely rare.
• Remember that the majority of children with gender issues cease to have them before or at the onset of puberty. Sometimes, it is better to let the child explore her identity for a while and take things no further.
• Do not trust that the gender clinic understands autism. Many people still push autistic people into normal psychological therapy and wonder why it makes things worse. Autistic people are different. CBT only works when it is geared towards autistic people. Likewise, medication can have different effects in autistic people compared to neurotypicals. Something seemly innocuous can actually be really harmful. While at university, I was given anti-depressants. A small increase in the dose of fluoxetine caused me to collapse unexpectedly, where my blood pressure had suddenly plummeted. I later learnt that this was very common in autistic people. Since then, I have tried about five different anti-depressants, all but one of which had dangerous or unpleasant side-effects.
• A lot of parents are told that their resistance to their daughter’s “transition” is the reason she has tried to commit suicide. This is too quick. There could be lots of reasons why she is feeling this way. “Gender dysphoria” rarely presents without other mental health issues. There is also the fact that suicide rates seem to go up after social or surgical “transitions” not down. Therefore, do not fall for the belief that they understand your daughter better than you do. You brought her up and have known her for her whole life.
• Many of you will have other children, siblings who are really struggling with the way your daughter is acting. You may be able to accept that she wants to be called “he” and whatever different name, but her siblings may not. As one mum said, this will turn their whole world upside down.
• There is no evidence that puberty blockers are harmless. They may leave your daughter infertile even if she accepts her biological sex and stops taking them. Puberty is natural, and to stop it is not natural. Evidence has come to light about the effect of pausing puberty on a child’s brain development (not complete until around aged 25) and bone density, as this doesn’t just affect the development of secondary sex characteristics, but also natural growth. It is worth bearing in mind that these drugs were originally invented and commissioned for treating prostrate cancer and later to help children with precocious puberty. Usually puberty blockers are administered at Tanner stage 2 of puberty, but girls do not reach peak height velocity until between stages 2 and 3, so stopping it at this point is likely to affect her final height.
• Keep in communication with your daughter’s school about what they are doing or not doing. Schools have been under fire in the media for “transitioning” pupils behind parents’ backs. Make sure you work together with the school, so that your daughter gets the support she needs.

I do not imagine that my parents were particularly worried about my “gender issues” as a child, as no-one ever took things further then, but I know that they would be worried now. Not just about how other people might view me, and what ideas they might put into my head, but also on how they are supposed to handle it. If you are upset and worried, then you are in good company, and there are many support groups locally and on social media for this kind of thing. You are not alone.

by Dr Gill Prestidge

Footnotes

[1] Mermaids is a UK charity aimed at supporting children and young people with gender identity issues, but concerns have emerged about whether it is fit for purpose.

[2] Barnes, H., and Cohen, D., (2019)

[3] Bejerot, S. and Eriksson, J. (2014)

[4] Research shows that until they are seven, children do not have a concept of their own biological sex. They are a girl if they dress as a girl and a boy if they dress as a boy.