Eating Disorder Awareness Week just ended (February 01-07), and I’d like to share my lived experience of anorexia nervosa and Avoidant-Restrictive Food Intake Disorder (ARFID) as an autistic ADHD woman.

From a young age, I experienced symptoms of disordered eating. My mum told me she can count on one (or maybe both) hands the amount of times I told her and my dad that I felt hungry. I’ve always had limited hunger cues. Also, because of my ADHD, I might get caught up doing something and completely forget to eat altogether. This is still an issue today, as it is for many autistic and ADHD individuals. Because of sensory issues, approximately 70% of autistic individuals struggle with nourishment. Evidence has shown that approximately 25% of people suffering from anorexia are autistic; this number could be as high as 52.5%, as stated in Chloé Hayden’s book, Different, Not Less.

A psychologist diagnosed me with autism when I was 16 and 9 months, and all my life I had felt separate from my peers. I felt like all I had was my eating disorder. It provided routine and structure, which my autistic brain appeared to thrive off of. It made it easier to fall into the trap of anorexia because I never really enjoyed eating to begin with. My first psychiatrist told me I likely would’ve been diagnosed with ARFID. Combined with my all-or-nothing thinking, I was fully engaged with whatever occupied my mind, whether it be my creative writing or restrictive behaviours (specifically with food). Anorexia gave me specific “rules” to follow, and my autistic brain latched onto them, making it extremely challenging to break them.

When accessing treatment, I experienced struggles. Almost every doctor I’ve met in an inpatient setting either disagreed with my autism diagnosis, and/or ignored it altogether. Most of them, from my experience, either believe autism doesn’t occur in women, or aren’t aware of how it presents in girls and women. One of my psychiatrists compared me with Forrest Gump (who does not have autism), saying, “Well, she’s not Forrest Gump” to my mum. Many doctors misdiagnosed a lot of women and girls with autism with borderline personality disorder, because the presentations can be similar in some ways, especially if the individual has experienced trauma (which is a topic for another day). Autistic women and girls are good at masking, in which “neurodivergent individuals hide their traits in order to fit in with society, meet neurotypical expectations and not be ostracised or bullied” (as seen by @livedexperienceeducator; Sonny Jane Wise, they/them).

There are times i miss the life I lived previously; being able to “control” my emotions and the body I had then. The illusion of control is something I miss. Over the years, I conditioned myself to avoid food, even thinking about food. I convinced myself that it was ‘bad’ to want food, and it’s something I’m still working to unlearn. Recovery is an ongoing learning process, one I am happy to be a part of.

Some Resources I Recommend (not a comprehensive list):

Canada

BridgePoint Centre for Eating Disorder Recovery (Saskatchewan) http://www.bridgepointcenter.ca

National Eating Disorder Information Centre (NEDIC) https://nedic.ca

Westwind Counselling and Eating Disorder Recovery Centre (Kelowna, BC) https://www.westwindcounselling.ca

Looking Glass Foundation (BC) https://www.lookingglassbc.com

Eating Disorders Nova Scotia (Nova Scotia) https://eatingdisordersns.ca

Recommended Reading:

Life Without Ed by Jenni Schaefer

Different, Not Less By Chloé Hayden

Eating in the Light of the Moon by Anita Johnston

Sources:

Hayden, C. (2022). Autism and eating disorders. In C. Hayden (Author). DIFFERENT, NOT LESS: A neurodivergent’s guide to embracing your true self and finding your happily ever after (pp. 104-106). MURDOCH BOOKS. 

Wise, S. J. (2022, September 10). [Masking in neurodivergence]. Instagram.