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Autism and Eating Disorders: A Journey of Acceptance and Awareness

By Rev. Ryan Althaus; MDiv, MBC

Today is what I’ve come to call a disorder day—an unpleasant, often unpredictable, pill-popping, anxiety-ridden, hold fast to whatever sane or stable thing that you can, just want to get through it, kinda day. For those fortunate enough to be oblivious to these dis-orderly durations of  agitation and agony—keep it up…you’re living a great life. However, to those that play parent to youth for whom these perilous 24-hour periods of pain and panic are a part of existence, allow the fact that I am writing you from within the throngs of one offer assurance in that there is hope.  

Regardless of who you are or what incited the day’s insanity, one truth is universal: disorder days suck. However, at the ripe old age of 38— following 20+ years of intense psychiatric interrogations, a near-deadly eating disorder relapse, and several decades of self-deprecating  internal dialogue—something strange happened. My demoralizing  disorder days underwent a grammatically subtle, yet psychiatrically significant, two-syllable shift from disordered to disabled.  

Let me take you there…  

“I must say, Ryan, you present one of the more interesting cases of Autism I’ve ever studied.”  

Autism?!” I parroted the diagnosis back in the form of a question.  

Did he just call me Autistic? I looked towards, though notably not into, his wrinkle-lined eyes. Rarely do I look into anyone’s eyes—the emotions that fill them are too intense for that. Instead, I’ve learned to look at the bridge of my conversational partner’s nose—their metaphysical third eye if you may. A fitting response for someone who feels as though they are trapped in a different dimension than the other earth-bound beings whom they are interacting with. Luckily, in a society where most conversations are interrupted by a cellphone screen, merely looking towards one’s face is often enough; however, just to be safe, I also tend to tack on my trademark turquoise-tinted sunglasses. Whereas a fashion accessory to most, these magical lenses act as an essential defense mechanism to dim the bright sights, loud sounds, and the eyes of overbearing creatures in a world that I seem especially sensitive to.  

“Yes, autistic…and interesting.”  

We sat in silence for a few seconds; then, void of a reply, he proceeded to explain. “The life that you’ve created to allow for your ritualistic behaviors, coupled with the ways in which you’ve learned to mask your anxieties, forgo your feelings, and play the part of a charismatic public figure through compulsive exercise and slightly odd eating practices— is pretty extraordinary.” He paused. “But, unfortunately, your  extraordinary is also isolating, exhaustive and, as is the too often the case with eating disorders, potentially deadly.”  

Rewind:  

I have always had a rather peculiar relationship with meals and movement. As a child, I’d separate foods via texture and taste and then consume them in abnormal quantities and ritualistic ways at specific times during the day. As for exercise? Early in life I figured out that physical exhaustion provided a quick fix for emotional uncertainty and anxiety far before I ever understood the terms emotion or anxiety. Thus, while most kids were playing video games and watching cartoons, I could be found running laps around the yard until my legs went numb because the forced-fatigue freed me from my feelings.

This quirkiness was considered cute and harmless as a kid, but as my eating and exercise idiosyncrasies evolved, my quirky-cuteness  transitioned into a dangerous eating disorder. As for the road of recovery and relapse to follow…? Whereas it has been intense and exhaustive at times, my hope is that my journey might help you, parent or patient, rethink recovery. 

Over the past decade, eating disorder and Autism diagnoses have each experienced an exponential rise, though the overlap between the two is often overlooked. My eating disorder was never about numbers or looks—like many on the spectrum, I’ve never been overly concerned with my appearance or others’ perception of me. Instead, my food and exercise patterns have always been based on the physical sensations of starvation and satiation, the comfort found in ritualistic eating, and the difficulty I have in identifying hunger cues and signals of physical fatigue. Needless to say, for most my life, these behavioral patterns around food and exercise were evidence of eating and obsessive compulsive disorder, and were treated with exposure therapy and  forced re-feeding. However, whereas an anorexic compulsion exasperates anxiety, an autistic ritual alleviates it—and, come to find, you cannot expose away Autism! In fact, in my experience, exposure therapy and forced feeding can cause long term trauma and further inhibit one’s ability to fuel a healthy and happy life. That said, with a proper understanding and support structure, being different, in terms of one’s eating habits, does not have to mean disordered. It just might require a little creativity and intentionality to match one’s energy output with foods and meal rituals that adhere to their unique taste and texture needs.  

In closing I’d like to reiterate that simple adjective, happy. Like far too many mis-diagnosed Autists, I spent most of my life made to think that I was disordered. So, in response to this recent shift in self-identity, I did what any 38-year-old child would do…I called my mom!  

“He diagnosed me autistic!” I exclaimed. 

“Well, you’ve always been pretty unique.”  

Her calm confirmation was far from the reaction that I expected. “Well then, why didn’t you get me diagnosed as a kid?” 

“You were a bit weird since the day you were born, Ryan. But you were  the happiest weird kid I knew! Why would I want to have you diagnosed as disabled or disordered when you were so contently and creatively you?  

She was right: It wasn’t until the world told me that I was disordered, that I truly started to struggle, and the internal battle that ensued thereafter took the form of restriction, isolation and anxiety. Happiness is rooted in self-acceptance—and, whereas my by ridding myself of the self-deprecating label of disordered did not change my identity, it has  set me on a journey to accept it, once more, as I did in childhood. 

Is it going to be an easy journey? Not in the slightest. I saw my anorexia as a phase—something I’d outgrow with age and therapy; however, I have had to accept that I will never outgrow my autism. Instead, my work now lies in exploring and embracing the gifts of autism in a balanced way.  

Was the diagnostic process simple? Absolutely not! Adult Autism evaluations are absurdly hard to attain—and finding support thereafter has proven to be equally challenging. That said, things are slowly changing, and I hope to be an advocate for others moving forward.  

Finally, am I glad I pursued this diagnosis? Incredibly! The treatment protocol, from medication to mediation to meal formation, is very different for Autism, as opposed to traditional Anorexia–and although it is going to require a lot of work and support to fully re-claim my health, I finally feel as though I am on the right track. 

5 Comments

  1. Andrea

    Good luck with the journey, Ryan. My daughter is currently an inpatient for refeeding and she tells me that half of the ward has ASD diagnosis and portray very ritualistic behavior around feeding time, many involving exercise. She also says that the ward doesn’t really have a separate approach to those with ASD, something that probably makes their recovery process even harder.

  2. Felicity Fay

    Thankyou Ryan, this is so interesting and helpful. I think there doesn’t seem to be enough focus on the role of ASD in anorexia. From what I have read, the main adaptions in therapy are allowances for sensory issues, but there must be more to it than this from what you say. Thanks for sharing, and good luck

  3. Stephanie

    Thank you for sharing your journey and the complexity that accompanies autism, OCD, and eating behaviors. For how common it probably is to have these overlapping struggles, there is a shocking lack of understanding amongst ED providers and therefore they use typical approaches for atypical people which often are not just unhelpful, but can actually be harmful. I am so grateful for telehalth which allows greater access to neurodiversity affirming providers- they are out there if you search hard enough!

  4. Rebecca

    Donna, check out the Around the Dinner Table forum for caregivers, where you can talk about this topic with experienced parents and other caregivers.

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