About Anorexia Nervosa & Autism
My experience with Anorexia Nervosa and Autism Spectrum Disorder
I struggle to explain Anorexia Nervosa (AN) and Autism Spectrum Disorder (ASD) to others because I am still learning about these illnesses, as is the medical field. This post is drawn from my experience with these disorders. Unfortunately, the mental health profession is underfunded and under-educated. I am not tainting the profession by writing massive letters with red paint on their walls with malicious intent. The reality is a shortfall in funding and education for AN and ASD has led to a lack of individualised treatment plans.
The mortality rate with AN is among the highest in the eating disorder (ED) community. Eating disorders are often accompanied by other problems such as substance use.
In Australia, for example, according to www.butterfly.org.au, eating disorders affect around 4 per cent of the population, meaning about 1 million Australians are affected in any given year.
Eating disorders do not discriminate – they affect everyone regarding race, ethnicity, religion, age, and gender.
Eating disorders are associated with co-morbidities such as depression, anxiety and/or panic disorders, addiction, personality/mood disorders, post-traumatic stress disorder (PTSD) due to traumatic life events, and more.
In my experience with ASD, I was left deep in the shadows. I was not diagnosed until my late 20s with ASD level 3 while battling AN at its worst. I looked everywhere for help and turned away. I was considered to belong in the “too hard basket” due to my ASD diagnosis.
Refusing to be a number in statistics
I was viewed as “too complicated”, so I am here today to tell my story. The rigidity and black-and-white thinking that cast me into this isolation area were what saved my life. The doctors didn’t see that my ASD gave me two choices, black and white … no shades of grey … and they were to fight or die.
I fought, day and night, with sleepless nights and draining days, my eyes locked on my screen, obsessed with finding help. I was no longer obsessed with being in control and thin. I had been denied access to the outpatient ED programme. My report stated” she no longer fits the criteria due to her level of ASD and Avoidant/Restrictive Food Intake Disorder (ARFID)” according to a hospital spokesperson. I became angry and hurt, and the pain I felt left me isolated.
I complained to health authorities and others influenced by the medical/mental health industry. I used my voice to fuel my fight. The more I was told “no”, the more I knew I needed to stand taller for myself and others in my position. I refused to be a number in statistics, forgotten and lost.
What challenges were to come were indeed challenging. The challenges continue; I am still in recovery and fighting because I can, I will, and I want to.
My thoughts still get the better of me, and I still hear that loud negative voice that is my AN screaming at me, but I use my literal thinking and listen to my ASD with no shades of grey ‘voice’, and I pick myself back up.
I nearly lost my life and many years to this sickness that I won’t get back, but I am here to look forward to recovery and starting a new life for myself, creating and finding a healthy identity.
I may not achieve a cure for either of my illnesses, but I will manage both in time, and each step takes me closer to my healthier goals. I know you can, too.
Vegetable-based meal plan
Life may be harder to manage, having AN, ASD and ARFID, combined with other co-morbidities that often accompany an ED. I struggle with textures, smells and tastes; being a vegetarian didn’t go well in seeking help either, and while I do not eat meat and don’t like many animal products, I do not judge those who choose to eat meat.
I had to fight hard to explain that I did not eat meat for moral reasons and not because I wanted to lose weight. I didn’t want any more of my identity stripped away from me. I understand that a vegetable-based diet is often a way for people with an ED to limit their intake, but I have been this way for years. I wouldn’t say I like the taste or texture of meat, and I substitute this with nourishment obtained from plant-based substitutes on a diet plan monitored meticulously by my dietitian, who is supportive of my beliefs but sensible in knowing the nutrition my body needs.
I do not condone using a plant-based diet as the base of weight loss. Importantly, if you choose plant-based diets for weight loss, please seek help, see a dietitian, and fuel your body with what it requires. Veganism or any plant-based diet is not always easy to manage nutrition-wise, and monitoring is necessary to ensure your body gets the correct nutrients and minerals.
Lack of nourishment will impede your recovery.
Sensory effects are a significant part of ASD and ARFID, and it can be overwhelming to the point where I cannot get out of my bed; I’ve curled up with my hands over my ears, plates have been flipped, self-injuries have been inflicted, I’ve had meltdowns in the middle of food stores, huddled on the floor in drowning tears, and I have had body-shaming days that are worse than words can express.
There have been days I cannot make the simple decision of what to wear to an appointment, so my partner selects my clothes and dresses me. Decision-making becomes so difficult. I’ve cried in the bath while my partner comforts me, washes my hair, and brushes my hair, all just to leave the house for an appointment or outing while crying the entire time.
AN is hard, ASD is complex, ARFID is hard, and life is hard, but life is worth it.
When the mirror of death has stared straight into your eyes while you have a tube feeding hanging from your nose, all because you hated yourself so much that you thought this is all you were good at. That this is all you can control in your chaotic life and restricting your weight was what gave you that high sense of euphoria you had been seeking, that relief.
Please hear me say that the euphoric feeling I sought out by restricting myself I now get from each one of my achievements is better than any ED can give me because I can see myself for what I am worth, and the vision is beautiful.
I accept I have AN, but it does not define me, and I accept my ASD because it saved my life in a desperate time of needing rigid thinking. Thankfully it tipped the right way in rigidity for me; it took rejection and losses for me to see this, but then it kicked into gear, ready to fight for my life, my rights, and my loved ones.
– Sarah Kathleen