Autism and Eating Disorders: Kevin Jarvis on Recovery and Neurodiversity
In honor of Autism Acceptance Month, we asked Kevin Jarvis about the role of autism in eating disorders, common autism misconceptions, and their experience of neurodiversity and recovery.
Current research shows 20-30% of adults with eating disorders also identify as having autism. Eating disorders are isolating all by themselves — add the additional stigma of battling co-occuring diagnosis, and the urge to isolate can become even stronger.
In this interview, Kevin shares their personal story of living with co-occuring diagnosis’ and the powerful tools that shaped their recovery.
What Role Has Autism Played in Your Eating Disorder?
Being autistic has played a HUGE role in my eating disorder experience. From all things sensory-based regarding food to the steps it takes to eat the food physically, autism plays a role in it all. I experience all my senses at such an extreme, and it carries over into my relationship with what I can eat and what is just a sensory nightmare. I crave consistency and structure, and food can rarely sustainably offer that. When something goes “wrong” (different than I planned), I immediately shut down and cannot complete any more tasks. The emotional labor it takes to eat is exhausting for anyone, but even more so for someone already experiencing a loud, chaotic world. Regarding physical mechanics, autistics are known for having poor muscle tone and lack of interoception skills. This means that chewing and swallowing require more practice and work than others. Regarding interoception skills, autistics can range from being able to feel their food digest to never knowing what a hunger cue is or anything in between/all around. Every aspect of my autism plays into my ED and vice versa.
“The emotional labor it takes to eat is exhausting for anyone, but even more so for someone already experiencing a loud, chaotic world.”
Autism Misconceptions: What ARE SOME COMMON MYTHS About Autism?
The biggest misconception is that we cannot feel or express emotions and, in return, cannot connect and form bonds with people. We hear this narrative a LOT that autistics cannot work in the mental health field; autistics can’t do jobs that are people-facing. While social skills may be hard for SOME, it is not that black and white for us all. For me, I have a hard time connecting with people in person and/or connecting with people I do not know or perceive as unfavorable. And I can form profoundly personal and unique bonds with many friends and loved ones because I feel and love DEEPLY once I know someone. When I work with clients in the field, it takes a lot of energy to meet with openness and nonjudgment (even though it is human nature) due to how quickly my brain categorizes people, but I do show up daily with an open mind and heart. I think the past was so biased and only saw autism as white cis boys who love trains and cannot make eye contact, and while that is a small fraction of our community, it is not the total community.
IS THERE A Link Between Autism And Eating Disorders?
For sure! I suggest checking out Naureen's work at @RDsforneurodiversity to learn about the neurodivergent affirming model of care. There are clear links in society and literature to show the rates of autistics existing with EDs are high. Naureen talks a lot about how, for example, ARFID is a feeding difference—a form of neurodivergence and less of an eating disorder. When we learn how to care for neurodivergent people, we learn that some of these behaviors we are labeling as bad and wrong are neurodivergent traits that should be worked WITH instead of AGAINST.
“When we learn how to care for neurodivergent people, we learn that some of these behaviors we are labeling as bad and wrong are neurodivergent traits that should be worked WITH instead of AGAINST.”
What Tools Did You Find Helpful In Your Recovery?
My biggest suggestion is to find your community. Find your freaks and weirdos who love you. If you have the energy, be the change and make the community you want to see. This is hard and emotionally taxing, and it is so worth it. Make yourself known when safe and be loud when able. Our EDs thrive in solitude, but we thrive in community. At the end of the day, we have us ya know? On weekends and holidays or non-session time, we have us. When there is bickering and division in the world, we have us. We have always had us before capitalism and white supremacy taught us not to have each other's backs. Lean into the community. Lean into care that is not centered around Benjamins and Marshalls.
How Do You Define Recovery?
Recovery is what we make it out to be or say it is. For some, that means no behaviors and positive self-talk all the time. For others, it means taking the harm reduction route of knowing what skills we could use and leaning into those when we can while also honoring that EDs are protective coping skills that serve a purpose and giving ourselves compassion for being a human who engages in these behaviors. We are complex beings, and to shove us all into one definition is unfair to us all. We do not all have the same access to care. We do not all have families to support us. We cannot all safely ask for help. Recovery is what you have access to. Only you get to define what it is or will be for you.
“Recovery is what you have access to. Only you get to define what it is or will be for you.”
About the Author
Kevin Jarvis is a disabled, mad, and queer artist from Western Massachusetts located on Pocumtuk land. Kevin's art and activism speak to their lived experience with mental health in an unfiltered way. They are passionate about making the world a more accessible place for everyone. And their lifelong struggle with things like ARFID, mental health, and chronic illness fuels this passion. Kevin works from a client-led lens that is rooted in anti-carceral care and harm reduction. You can find Kevin and their work at @kevindoesarfid on Instagram.