Why do so many trans and neurodiverse people have eating issues?

CONTENT NOTE FOR EATING DISORDERS, SEXUAL ABUSE, GENDER INCONGRUENCE AND DYSMORPHIA

A discussion came up in a clinical consultation group I’m involved with about the number of trans people who have disordered eating. I reeled off some thoughts are not always considered, so I’m repeating them here.

It is well known that trans experiences often co-occur with some form of neurodiversity (Sensory Processing Disorder, autism, ADHD etc). So I’m going to start with these, less often thought about, reasons for eating issues and then afterwards I’ll talk about the two things people might assume – body dysphoria and trauma.

As our relationship to food, whether disordered or not, is complex and multidetermined, trans people may be having many-layered and complex responses to food and eating, some aspects of which can be missed.

IS IT A SENSORY ISSUE?

Many trans people have sensory issues, that can be an aspect of different kinds of neurodiversity. This can be around food texture, smell or taste, but it might also be around sound – e.g. the sound of someone else eating, people talking or the noise of cutlery and crockery. Some neurodiverse people get overwhelmed when their senses have too much to do, so it’s not the sounds and tastes and thinking about communication individually are problems, but all together they could be too much.
When these problems are out of the person’s awareness and go unresolved, or are even minimised or denied by caregivers, they can develop into stress reactions and avoidant or problematic behaviours around food or eating.

We need to start taking sensory difficulties and overwhelm seriously. If someone can only eat bland food whilst alone in a room with non-metallic cutlery, that’s cool – we should never have to do a thing that is painful, and for people with sensory differences, things that seem quite benign to neurotypicals can be agony. If hearing others eat or clanking plates and cutlery can be masked by soft music, a person should not have to sit down to a meal without that adjustment. Noise cancelling headphones can also be very helpful in this case. If a person can’t manage to talk or listen whilst also eating, that’s okay. If they can cope with food texture just fine at home but it’s too much in a noisy restaurant, that’s okay too. If they want to smother everything in very hot sauce because that’s a good sensation, that’s a great sensory fix. If they cannot eat sticky food with their fingers, or deal with bones, pips and gristle, we just have to believe that matters.

For some people eating is always going to be a sensory challenge no matter what and all we can do is find ways to support them to cope with that challenge. Sensory issues and overwhelm often get worse at times of stress, so there may be days our clients cope with eating and days they just can’t.

BODILY CONTROL

Some trans people use their relationship with food to manage feelings of physical incongruence (previously called dysphoria) they feel with their body or to change the shape of their body. In young people, eating issues can develop out of a desire to delay or halt puberty.
In the UK, trans adolescents have recently been denied the kind of bodily autonomy other teenagers have in law by the Bell v. Tavistock ruling. Trans adults are denied autonomy by UK gender clinic waiting lists that are up to 5 years – this despite robust clinical evidence that transition healthcare is life-saving and overwhelmingly helpful.

It is imperative that we help trans people, especially teens, feel a sense of bodily autonomy. Understanding the difference between dysphoria and dysmorphia is vital as part of this. Trans people don’t misperceive their own bodies, as in dysmorphia, nor is it about hating their bodies, although if unalleviated, feelings of hatred can develop. Trans people know well the physical reality of their bodies, the problem is their brain telling them their bodies should not be like that. Unlike dysmorphia, it cannot be cured by psychotherapy – the clinical evidence for this is well established.

Uninformed clinicians might get dysphoria and dysmorphia muddled up and focus on trying to make the trans person accept their body, a practice that simply does not work for trans people and can increase their distress.

But on top of this, trans bodies are sites of violence and aggression. Trans children, like other kids that are marginalised, vulnerable and isolated, are highly likely to have been sexually abused because of that vulnerability. Sadly, predators take advantage of difference and social isolation. Whether or not they have “come out” as trans, differences in behaviour and socialization are often apparent and trans people frequently report being excluded as children. Trans kids are more likely to be bullied, attacked and abused in other ways throughout life too. And their bodies are aggressively mislabelled, policed and treated with invasive curiosity. A trauma history can exacerbate this, with people, including therapists, wrongly assuming trauma “causes” trans feelings when the opposite is true – being a gender diverse person in a transphobic world can lead to trauma.

Trans people are also more likely to have been homeless or lived in poverty, and this can bring its own complex issues regarding food. Food and eating can become the means to gain a sense of control amid these different forms of violence, marginalization, and coercion.

IS IT RELATED TO INTEROCEPTION?

Many neurodiverse people have problems with interoception, their ability to know what their body is telling them. Not knowing when we are hungry or full may be part of overeating or undereating. During childhood, this may have made it harder for caregivers to get a child to eat or to not overeat. If this then became a battleground there can be extra emotional difficulty here, with issues of guilt and shame, and feelings of being controlled by others around food.

IS IT A STIM?

Stimming, or self-stimulatory behaviour, is common in neurodiverse people. It can be benign, such as sucking, chewing, hand-flapping, rocking, humming or spinning, or self-injurious, such as hair-pulling, cutting, hitting self, or skin-picking.

Neurodiverse people may have a greater need to seek comfort through stimming. They may also have been discouraged from some relatively harmless stims (think about which is more harmful: thumb-sucking or smoking. Now think about which is more socially acceptable for adults to do). Eating can be a kind of stim – a self-soothing sensory experience. This, of course, can be completely benign but can also develop into something potentially more harmful, such as eating to the point of unwellness. It may have been more socially acceptable to stim using food than to fidget, fiddle, rock, or flap as a child.

Recognising what stimming is and what it does for the nervous system can sometimes allow someone to find alternative stims if eating has become an issue. Stim toys you can safely chew are available on the internet, for example. I have had clients who wear these around their neck and have let the people around them know about their need to use these to soothe themselves.

Trans, autistic and celebrating difference

There’s a lot said about the co-occurrence of transness and autism, but I am struggling to find an article that does not slip into unhelpful speculation about how autism might “cause” transness. The latest article I read is good for the most part, but still falls in to speculation about cause along with other tropes and inaccuracies, particularly about non-binary people, that I found unhelpful.

I wanted to write a little about my own personal journey to embracing the simple fact that a lot of people are both trans and autistic, including me.

Human variances often co-occur

Let’s start by laying out a simple fact. We know, from research, that there are a whole bunch of divergent traits that cluster together in the population – non-heterosexuality, left-handedness, genius, synaesthesia, certain tissue disorders such as EDS, gender variance, certain physical appearances, dyslexia, adhd, sensitivity, autism, etc.

So, “different” people tend to be different in lots of ways.  Break some of the above “things” down a bit more, and we see that they are in fact clusters of other traits that come together, like Seurat’s dots, to make a certain kind of picture – and that actually, when you start looking at these individual traits, you discover that no two geniuses, and no two autistic people, have quite the same formula of traits, even though the overall effects can have something in common. Genius isn’t a “thing” and neither is autism, nor transness – these are all many threads of experience woven together to create overall effects that are broadly similar but often diverge in the detail.

Which differences do we see as “pathological”?

How we respond to these traits is interesting in itself. A hundred years ago, left-handedness was seen as unacceptable. In my (left-handed) grandmother’s time, children were forced to write with their right hand. In my (also left-handed) mother’s time, left-handedness was still disapproved of, but reluctantly allowed. Now, I hope, prejudice against left-handed people has all but vanished, though the vestiges of it remain in language in words like sinister.

Suppose the stigma was still around today, in our society that loves to pin things down with “hard answers”. Would the co-occurrence of left-handedness and autism start people down a track of “maybe autistic people just don’t feel able to conform the way neurotypicals do, and that’s why they write with their left hands”. Would the inevitable bullying that any person who is different gets, and the resultant anxiety and stress, lead people to see left-handedness as a symptom of mental health problems or abuse, rather than understanding stigma and bullying due to being different as the cause of any mental health problems or abusive treatment?

Society decides which traits are a “problem” and which are an asset. Nobody is going to diagnose somebody with “genius disorder” and raise funding for a cure. Thus Alan Turing was celebrated for his genius, treated (relatively) neutrally for his left-handedness, isolated for his (probable) autism, and driven to suicide as a result of horrific criminal and medical interventions for being gay.

Nature or nurture?

I’m guessing most people, looking at the list above, will have some traits they prefer to think of as more “biological” and some which they would prefer to think of as less so, but we are all, as Cordelia Fine says, the result of a ““sheer exhilarating tangle of a continuous interaction among genes, brain and environment.”

What matters, is that trans people are more likely to be autistic, and autistic people are more likely to be trans. Not why this happens, unless you want to see human variation as disease, and look to cure it. This non-affirmative, pathology approach is what leads to tragedy, as in the case of trans and autistic Kayden Clarke. If both/all aspects of Kayden’s identity had been affirmed and accepted, he might still be here.

Besides, what dullness and lack of creativity would ensue if some humans did not exist outside the boxes the world expects, and thus teach people to expand their horizons and frontiers? If we try to iron out differences society sees as problematic, what other treasures might be erased in the process?

As somebody who instinctively picked up a lot of male socialisation, but fumbled with female socialisation, I reject the idea that my gender identity is caused by my autism in a “you are poor at reading social cues, therefore you didn’t learn how to be a girl” way. If I was so bad at picking up cues, how did I take to male-socialised behaviours like a duck to water?

Then there’s “your thinking is rigid – you’ve decided because you liked boy things you must be a boy”. I hear this a lot – that the autistic mind is deluded, unable to cope with nuance. But my autistic mind is just a fountain of nuance – I am open to so many possibilities, so sensitive to detail that yes, I can get overwhelmed and lost, and it has taken me a half a lifetime and a lot of therapy to find my own edges amid a sea of information and cultural story about gender.

That I must be socially labelled and legally categorised according to the shape of my genitals is a rigidity I cannot live with. To me, it’s an idea that becomes increasingly bizarre and arbitrary the more times I think about it. If my autism helps me more easily defy these arbitrary rules, why then it is an asset.

Conformity vs divergence

I think in our increasingly individualistic society, it’s important to understand that human beings have evolved to cooperate with one another, and that this is generally a positive thing about humans. But I like to think of human difference as an important balance to our tendency to conform. Cooperation can put a person on the moon, but people are also too good at going along with things that are not in the best interests of anyone – this is how we can end up voting for fascists, or arbitrarily colour coding our children.

We need to both go along with each other, but also put our feet down and say no. It’s a delicate balance between our immense capacity to work together for the greater good and our equally immense capacity to form a mindless mob that can be led into all kinds of nastiness.

People who smell colours, kick the ball with a different foot, experience gender differently, and focus in on all kinds of human experience in a drastically different way to the norm, are able to offer up different possibilities, remind us our experience is not monolithic, introduce the element of uncertainty that we require to balance progress that can take us to the moon but also over cliffs.

Combating the shame

The process of coming to terms with being both autistic and trans has led me to at times fall into a pit of shame. “Why can’t I just be like everyone else, why do I have to make it awkward for people?” is a constant theme, as I find myself presenting a challenge for everyone I meet that makes our interactions at times not fun for anyone. I feel shame that I can’t perform woman, or small talk, or gratitude for being allowed to exist, but instead speak my mind, tell people how I really feel, and who I really am.

In the worst moments, I consider it would be better for everyone if I did not exist – the road would be smoother. But the road to where? Where is the human race going, that it cannot take people like me with it? Where is the LG community heading, that it hasn’t got room on the bus for people who don’t conform to an assimilationist idea of monogamous, neurotypical, gender conforming respectability?

I feel like an inconvenience, but maybe I am the grit that forms the pearl. Maybe I am the grey cloud that waters the dry earth.  Maybe people like me are meant to be here and have our value and our place.

Maybe we could be celebrated, instead of being constantly, relentlessly pushed aside.