Written by Hannah Brockway
Though it is a genetic condition, it is triggered by a calorie deficit or weight loss. Once someone with a genetic susceptibility to AN drops too far below their body’s preferred weight, (which is different for each person), disordered thoughts and anxiety around food will begin to intrude. As the person restricts their food further, to appease the demanding voice of AN, these thoughts increase in volume and rigidity.
Unfortunately, a higher percentage of Autistic people are genetically predisposed to AN than non-autistic individuals. We are also more likely to trip the trigger by losing too much weight. In my experience, the cause for weight loss can be grouped into three categories, which may or may not overlap:
It is not uncommon for people to lose a bit of weight when they move out of home, start intensive training for a sport or become a vegetarian or vegan. A friend of mine lost about eight kilos when he became vegan. However, because he isn’t predisposed to AN, he increased his food intake and gained back what he had lost.
For Autistic people, there are more circumstances in which unintentional weight loss may occur.
We are much more likely to have ARFID (Avoidant Restrictive Food Intake Disorder). This heightened sensitivity to taste, temperature, smell and texture can limit our safe foods and most of us would prefer to go without than eat something unpleasant.
If this happens regularly, the calorie deficit will likely result in weight-loss.
Many of us also have Obsessive Compulsive Disorder, which can present as a rigidity around the timing and location of meals, the people present and utensils and crockery used.
If these things are not perfect, eating will cause anxiety and many of us will choose to skip the meal. As with ARFID, if this happens too often, the individual will likely lose weight.
Poor interoception, Irritable Bowel Syndrome and anxiety can dull our hunger cues, which can result in missed meals. When we are young, we are taught to eat during recess and lunch and, when we leave school, many of us learn to eat according to the time. However, if we do not, or if our anxiety is so strong it causes us to feel nauseous during or after eating, our intake may lessen, once again causing weight-loss.
This thinking is only encouraged by the diet industry.
I know Autistic people who have obsessively tracked their macros and calories, and eliminated all processed food and fats, all in pursuit of health, with no desire to lose weight. Unfortunately, however, their strict diet inevitably causes weight-loss, triggering the disordered thoughts.
We are also more likely to lose weight deliberately for reasons unrelated to body dissatisfaction. Compared to approximately 1.85% of non-autistic individuals, 6 – 26% of Autistic people are transgender.
It is not uncommon for those experiencing gender dysphoria, in particular those Assigned Female At Birth (AFAB), to try to lose weight to stop their periods, reduce the size of their breasts, or lose feminine curves to appear androgynous.
Aside from gender dysphoria, some of us with a heightened sensitivity to touch feel generally uncomfortable in bigger bodies. Scottish comedian Fern Brady has said in a few interviews that she prefers her body to be smaller because she doesn’t like the feeling of having breasts.
I hate the feeling of my skin rolling — though it’s difficult to know if my disgust is caused by my poor body image.
We are often labelled as “socially awkward,” due to our alternative communication style; plain “weird,” because of our intense and sometimes odd special interests or stimming; and most of us know we are somehow different, even if we do not yet understand how or why.
In a society that applauds thinness, some of us wonder if making our bodies as small as possible will help us fit in with our peers or colleagues, or at least make us less of a target for bullying. I constantly observe others, in my quest to decode the unspoken social rules.
In school I saw fat children bullied simply for existing, while the popular people were almost always slim. I knew I was uncool and, though I had only been openly bullied a handful of times, I knew I was an easy target. I wanted to give the bullies as few reasons to turn on me as possible. I was already underweight, but I could make myself thinner. Surely if I lost all the fat on my body, that would outweigh — no pun intended — my social faux pas. In addition, I started to wonder if I was a lesbian when I was about eleven. I thought some of the girls at school were so beautiful I didn’t want to stop looking at them. I didn’t know it was possible to be bisexual or pansexual — it was the early 2000s and I was still young — so I thought if I was attracted to girls, I must be a lesbian. Even though I grew up in a queer-friendly house, I knew society wasn’t. I heard gay jokes at school; mention of gay bashings; some family friends who are gay chose particular airlines to avoid stopovers in countries where homosexuality is illegal; same-sex marriage still wasn’t recognised; and gay couples couldn’t have children — I wasn’t aware of IVF yet. I didn’t want to be gay. I knew life would be much harder. I would be on the outer, the butt of jokes.
Even though I knew slim, beautiful women could be gay, the media’s preferred depiction of masculine lesbians overpowered my own experience. I have also heard of people restricting their food intake to punish themselves for being gay. Even though these people were never homophobic, their internalised homophobia was vicious.
To make matters worse, mainstream treatment for eating disorders is, at best ineffective, though usually severely traumatic, for Autistic people. And there you have it: the recipe for a Severe and Enduring Eating Disorder (SEED).
Hannah is a professional violinist, author and passionate mental health advocate. She is currently in recovery from anorexia nervosa, after a sixteen-year battle. She was diagnosed Autistic in 2022, which allowed her to begin to let go of a lifetime of self-hatred for being odd. Read more about her traumatic journey with anorexia nervosa in her book ‘A Cautionary Tale’. Ebooks can be purchased here or order a hard copy by contacting Hannah through her Instagram page.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past and present, for their wisdom, their resilience, and for helping this Country to heal.
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