TW: eating disorders, self harm, suicide
At 15 years old, I was given a diagnosis that was 15 years too late. I was told I had autistic spectrum disorder (commonly referred to as ASD). I sat in an empty room of a psychiatric ward with a locked window, the strings cut from my hoodie to prevent me from taking my own life and two psychiatrists sat opposite, breaking the news.
At the time, I couldn’t quite believe it was true. Surely they couldn’t be talking about me? Autistic meant different, and that was something I’d actively spent my whole life so far trying not to be. It felt like a huge label had been slapped on my behaviours and mental health, and they thought this was the answer to it all. It wasn’t the answer, it was much more complicated than that…
At the time I had lost count of the amount of times I’d attempted suicide, heavily restricting my food and fluid intake as well as self harming and hearing voices: I was a complete mess and was still deteriorating despite the ‘help’ they were meant to provide me with in hospital.
But this was not because I was autistic. It’s because I’d gone 15 years wondering why I couldn’t fit in the way everyone else did. The deterioration of my mental health had been driven by countless years spent knowing that something was “wrong”, but not knowing why.
The major depressive disorder, anorexia nervosa and anxiety were a product of this equation that was not solved in time to contain them. Once these illnesses surfaced, they planted their roots, and bloomed.
Despite being an incredibly anxious child who didn’t cope well with change or social situations in general, I was completely overlooked. Why? Because I was considered shy and polite even though my head was whirring with constant stress and confusion. I never spoke up or told anyone how much I was struggling until it broke me.
During school, I was pushed far too much academically, given extra classes for math and English while the other kids got to experiment and play. They told me I was gifted, and studying 2 years ahead of where I was supposed to. They wanted to push me far beyond my limits, sacrificing my mental health and freedom for it. The teachers didn’t notice that putting my hand up in class was the most daunting part of my day. They didn’t notice even when I broke down and had panic attacks about reading out a poem I’d written to a church full of people. They didn’t notice that almost every social behaviour I had was a carbon copy of the other girls, and that I’d be called a copycat and let people walk all over me, their footprints still on my skin now.
I was a good girl, a model student in the teacher’s eyes, because I always did exactly as I was told. I was quiet, did my work, and never caused any fuss. And this is the case for so many others, all over the world, who mask their autistic traits, jeopardizing their own wellbeing in exchange for social acceptance.
Despite what many people think, autism actually has no gender bias. Boys and girls just present very differently from each other although actually having the same condition. For every 4 boys that are diagnosed with autism, only 1 girl is. So what happens to those other 3? They become much more vulnerable to go on to develop life threatening eating disorders, obsessive compulsive disorders (OCD), self harming and committing suicide. The lack of understanding of autism in girls is, to put it bluntly, actually killing people.
As I write this, I am now 19 years old. I’ve been in and out of countless hospitals and care teams since 2016. I’m arguably in one of the worst places I’ve ever been in terms of anorexia. Being autistic statistically puts me higher up the list of people who may never recover from it and it's also thought that people with both anorexia and autism die 3 decades earlier than a non-autistic anorexia sufferer.
One of the most common traits of autism is being very black and white in thinking, as well as not being able to adapt to change. As we all know, the world changes all the time, probably now more rapidly than ever with the use of technology. This meant I needed something to stay the same, I needed something that I was in control of: and that thing happened to be food and what I put into my body. As a child my disorder displayed itself as extremely fussy eating. I would limit the types of food I would allow myself, never try new things, and never increase my portion sizes past that of a 6 year old. When I grew into my adolescence, the sheer anxiety and fear of starting secondary school with so many new people, classrooms, and expectations made me feel physically sick, and I suddenly felt so conscious of people watching me eat. So I stopped. I’d break up and nibble on a cereal bar throughout the day in the toilets and drank energy drinks to keep me awake. At 11 years old, I was already starving my body and not caring about the possible outcomes. So now, 8 years later, in the depths of my eating disorder, my thoughts and behaviours, like many other people suffering with eating disorders, are pretty fixed in my head. But in order for me to change them, there’s two barriers to cross instead of just one.
Recent estimates show that up to 20% of people suffering from anorexia are autistic. To put that in perspective, only 1% of the whole population are autistic and 0.3% of the population have anorexia. There are major links between the two: the need for control, routines and rituals that may seem abnormal to others, focusing on numbers, order and rules, repetitive behaviour and resistance to change. So autistic people who already have these traits as a part of everyday life are much more susceptible to anorexia. Lots of autistic people already struggle with food from a sensory perspective, limiting what they eat due to textures, smells and flavours. They also have difficulty sensing hunger cues which again, can so easily develop into its own disorder.
Some psychologists have also argued that anorexia and autism should be on the same spectrum because of the many crossovers. Although my relationship with food was always negative due to autism, I believe anorexia is a separate part of my brain that developed later on in my life. People are born autistic, nobody is born anorexic.
So how can we fix this? How can we catch these thousands, potentially millions of girls who fall through the cracks of this outdated system? How can we save these lives that shouldn’t be lost?
The system must be changed. It doesn’t fit everyone: it fits the standard “young boy obsessed with trains who talks to himself” preconception that so many people have about autism. It doesn’t fit the ones who can just about keep it together at school and then melt down every single night. It doesn’t fit the ones who learn to copy their peers and suppress any of their differences. It doesn’t fit the people who feel like the only way they can fit into the world is by hiding who they really are, wearing a mask to shield their inner truth.
Written By Mae Lewis