Emily: Autism and Atypical Anorexia

For Autism Acceptance Month, Emily shares her experience as an autistic woman living with atypical anorexia.

My Early Years

Growing up I always felt “different” to the people around me.  I’ve never been able to focus in a classroom. As soon as the teacher started writing on the boards and talking, their voice would fade away and my brain would take me to another place. I wondered if everyone had this or if there was something wrong with me. The only way I could properly learn was through practical lessons.  I loved reading books and felt like I could escape and go to another reality where I didn’t feel different.

My first experience of disliking the way I looked

It was around the age of 10 when I started thinking negatively about my face and body. I had just gotten a haircut, a very short bob. I was in PE and the substitute teacher pointed to me and said, “give that boy a turn”. Something as small as that made me feel insecurity for the first time. The next day I remember putting a boob tube on in the morning and my mother pulling all the tissues I had stuffed in it, out.

I remember being so envious of girls who I thought were ‘perfect’. I remember seeing the positive attention they got and I thought that if I looked like them, maybe it would take the attention away from how ‘weird’ I was, or maybe I wouldn’t be called a boy.

In my teenage years I had friends who were obsessed with the way that they looked.  They pointed out things I ‘should’ change about my body, and it made me feel worse about myself.  My friends encouraged me to deliberately lose weight and to copy their eating habits.

I didn’t realise that I was at an unhealthy weight or that I was unwell until people started commenting on that too.  My friends were complimenting me and people I barely knew told me I looked ‘better’.  My family told me they were worried, and I felt very misunderstood.  I felt lonely because I still felt like no one in my life thought I was good enough.

Diagnosis

I became very depressed and couldn’t cope with school or anything really.  My Mum wanted me to be assessed for autism.  My Mum and one of my siblings are autistic but I never thought I was. When I was diagnosed with autism, I felt numb. I thought “I am stuck this way.  There are no cures”. I did not want to be autistic. I was also diagnosed with atypical anorexia.

I found it hard to get help after my diagnosis because I didn’t fit the stereotypes that people had in their minds about autism and anorexia.  Professionals working with autistic people need more education about supporting us because their words can be harmful. It didn’t help when people treated me like I was attention seeking or could change how I thought without help.

It’s taken a long time for me to accept my autism diagnosis and I still have days where I wish I wasn’t the way I am.  I think people talk about the ‘positives’ of autism and don’t talk enough about how hard it can be to perceive the world differently from other people around you.

We don’t hear enough stories about young autistic adults.  I’m still learning about myself and how to look after myself, so I feel more in control of how I react to people and the environment I live in.  It has also been hard to just be myself when I spent so many years trying to be someone that other people accepted.

I think I started getting healthier when I started thinking about what I could do with my life that had nothing to do with my body.  I went back to school, and I studied to work in community services or disability work.  I have a lot of empathy and can sense how other people might be feeling.  It can sometimes be hard to have this as a strength, but it is also helpful for working with people who need support to communicate.

Long term effects of having an eating disorder

I try not to think about my body in terms of its size, but my weight fluctuates a lot. I have long term issues from the eating disorder.  I have developed Gastroesophageal Reflux Disease and Irritable Bowel Syndrome (IBS). My food choices are more restricted for health reasons. I wish I asked for help sooner so that I wouldn’t have damaged my body.

Being Autistic or having other disabilities, does not make you weird or different. What does normal even mean? Everybody is different and everybody struggles with things, just sometimes it feels like our struggle won’t end. But the more you accept yourself, you’ll feel more acceptance from everyone else too.

I have to practice feeling proud and confident.  I still find it hard when people talk about my appearance. It is something that I am still working on.  I wish I could tell my younger self that we are all beautiful and that she should feel confident in her own individuality. I wish we could see what other people see about ourselves.  I wish I could tell her she wasn’t weird or not normal – she was just autistic.

April Autism Awareness Month

A lot of people think they know about autism.  I don’t think having one day a year to be ‘aware’ is helpful.  What I would like to see is more people being educated about autism and eating disorders.  We need funding put into diagnostic assessments for young people with disordered eating. We need to be believed when we ask for help.  I hope raising awareness about autism and eating disorders happens all the time and not just in April.

Written by Emily, a 25-year-old Autistic woman. Emily works in the disability sector as a support worker. Emily enjoys art, writing and building a garden.

Get support

• Butterfly National Helpline – for support with eating disorders or body image concerns, connect with Butterfly’s National Helpline 7 days a week, 8am-midnight (AEDT). Call 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au
• Eating Disorders Neurodiversity Australia (EDNA) – EDNA is a neurodivergent-led organisation focused on building neurodiversity-affirming, accessible, and inclusive eating disorder healthcare. EDNA  offers online peer support dedicated to supporting neurodivergent people with lived or living experience of an eating disorder find a sense of community and belonging.
• Autism Connect – a free, national autism helpline, providing independent and expert information over phone, email and webchat. Call 1300 308 699, email or chat online, Monday-Friday, 8am-7pm.
• The Autistic Realm Australia (TARA) – TARA aims to improve the lives of all Autistic people through empowering, facilitating connections, and educating those who support autistic people by sharing lived experience and being visible.

Further reading

• More information about autism and eating disorders
• Eating Disorders and Neurodivergence: A Stepped Care Approach – research and lived experience evidence regarding the prevention, early identification and treatment of eating disorders and disordered eating for neurodivergent people.
• Autism, eating disorders and me – Melanie’s story
• Autism, eating disorders and body image: through the lens of sensory processing – Laurence’s story
• Anorexia’s link to autism, explained