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I twirled a few strands of spaghetti into a marinara-doused bale on my fork then took a bite. Normally, I chew just long enough to avoid choking, but while hosting my family during a pre-pandemic dinner, I paced myself so I wouldn’t be the first to finish. As a spongy bolus formed in my palate, the thick, wet mass against my teeth no longer resembled the texture of food. It was a slick wad of noodle bits too slimy to swallow, and the longer it sat on my tongue, the more I wanted to puke. To avoid gagging, I spit the glob into a napkin and tried to hide the grimace on my face.

I couldn’t eat anything at all while sick with covid-caused pneumonia in March 2020. During recovery, I tried and failed to reincorporate pasta — a go-to from childhood I once relied on when I didn’t trust anything else. Over the next few months, my meal choices dwindled to less than a handful of recipes — all variations of each other — plus zucchini when I could bear it.

My eating disorder has been a lifelong battle, and I’ve been given a variety of diagnoses that never seemed like a perfect fit. I didn’t think there was a word for my experience until I came across a meme shared between parents of neurodivergent kids. It asked, “Why does my child struggle with fruits and veggies?” The image showed four blueberries in varying states: plump and juicy, small and squishy, round and sweet, dry and sour. Under them, beige crackers lined up congruently with a different message: “The same every time.”

That’s when I learned about Avoidant Restrictive Food Intake Disorder, or ARFID. People with ARFID often prefer bland foods (like refined carbs) and prepackaged meals (like a specific brand of frozen dinners) for their invariability. We choose based on individual sensory needs, seeking or avoiding specific tastes, textures, smells, colors and temperatures. Many of us have obsessive-compulsive tendencies and become more restrictive over time, eliminating foods after negative encounters. We might fear choking, gagging, vomiting, or physical pain and discomfort, which can occur if our senses are disrupted or surprised.

Widespread lack of awareness leads to underdiagnosis. Because it’s often identified in childhood, autistic kids or those with ADHD might be diagnosed with ARFID after displaying symptoms, but kids who aren’t diagnosed as neurodivergent might instead be labeled as picky eaters and fail to receive the support they need. I was the latter. In elementary school, I was evaluated for neurodivergence, but as a gifted student, I was ultimately labeled a shy perfectionist whose academic and social challenges weren’t “severe” enough to formally diagnose. My eating habits weren’t considered in the process.

Physicians are often still influenced by outdated perspectives that neurodivergence primarily impacts boys, and diagnostic procedures are biased to miss criteria that don’t align with stereotypes. Some evaluators fail to diagnose girls in a timely manner because of sexist behavioral expectations. Research sometimes relies solely on male populations, leading to a lack of data about broader experiences, but a new interest in a “female phenotype” has emerged. This has led to more information about the way neurodivergence impacts eating — showing high rates of overlap between ADHD or autism and various eating disorders in girls and women. Unfortunately, this new focus on girls and women has led to an inaccurately binary view of different phenotypes, eliminating nonbinary and intersex people from studies and reducing consideration for trans people.

“It’s appalling — the lack of autism awareness among health-care professionals,” said Abbie Jones, a nutritionist who recently launched the Autie Kitchen, a counseling space for late-diagnosed adults. Some doctors have insisted Jones is not autistic because she speaks and makes eye contact, she said. Neurodivergent adults are often misdiagnosed with depression, anxiety, OCD, psychoses and personality disorders. These and other conditions could also be comorbid, leading to an incomplete diagnosis if neurodivergence isn’t recognized.

Neurodivergence and its food-related comorbidities are often misclassified as pediatric conditions in clinical nutrition settings. “We seem to forget that autistic children become autistic adults and these types of behaviors may persist,” Jones said, adding that without specialized care, neurodivergent people might never understand the root cause of our challenges and therefore never learn to cope.

“Our brains are wired differently,” Jones said. “We know that what works for a neurotypical client may not work for a neurodivergent client.”

Like many who went undiagnosed during childhood, I felt confused about and ashamed of my neurodivergent traits. When I was young, I assumed my symptoms were experiences everyone shared. Over time, those challenges were either treated flippantly or as if they were a product of my own failures.

As more online discourse about neurodivergence made its way to me, I started to recognize myself in the anecdotes other people shared about themselves. I began to suspect that I might be autistic, but I doubted my self-assessment until I discovered ARFID. It was an epiphany that made me feel more certain about my instincts and helped me see that I wasn’t alone. I immediately began working with a professional who specializes in treating neurodivergent people with eating disorders, started seeing an autistic therapist who offered validation about my experiences beyond the kitchen, and eventually met with a clinician who evaluates adults for neurodivergence.

Seeking a diagnosis in adulthood often requires persistence, self-advocacy and knowledge of the language that describes neurodivergent experiences — but when I first sought mental health care as a teen, I lacked all of that information. Specialists made assumptions based on my perceived gender and appearance. I was diagnosed with depression and misdiagnosed as anorexic and then later an eating disorder umbrella term that always felt like a professional shrug.

I was placed in an inpatient program during my last year of high school, where group therapy centered on topics that often felt irrelevant and introduced anxiety as I failed to fit in. I started purging after my food choices were stigmatized as unhealthy and morphed into the kind of patient the program wanted me to be — developing negative thoughts about my body and worth. I didn’t know it, but Jones explained that I was masking, or copying neurotypical behavior, to camouflage my neurodivergence. This can trigger disordered eating in neurodivergent people as we mimic problematic social norms. It can also lead to burnout, especially for those who are undiagnosed as neurodivergent or lack support.

Approximately 30 percent of anorexic patients show autistic traits, and traditional approaches to recovery can be hindered when their neurodivergent tendencies — including sensory processing differences — aren’t addressed as part of treatment. ARFID and anorexia or other eating disorders can co-occur, but interventions should be individualized based on root causes of behaviors. Even when physicians recognize that ARFID should be treated with different protocols than anorexia, more than half use the same approach for both disorders.

Research about ARFID in children often gets applied to adults even though populations differ, and an evidence-based and developmentally appropriate treatment for adults doesn’t currently exist. “Treatment needs to meet a patient exactly where they are — helping them build the skills that they’re missing and building on strengths they already have,” said Samantha DeCaro, a psychologist and assistant clinical director of the Renfrew Center. “What I’m seeing and hearing on social media is that folks with ARFID feel discouraged because many eating disorder professionals really don’t know how to treat ARFID. The sense that I get is that folks don’t know where to go.”

Becca King, a dietitian helping adults with ADHD, suggests asking potential clinicians specific questions about neurodivergence before starting any new therapy or program. If you think you might be neurodivergent, it is important to know their views on autism and ADHD, how many neurodivergent clients they see, and how they treat emotional dysregulation and executive dysfunction.

ADHD is correlated to less successful treatment outcomes, which could be associated with a failure to support executive functioning. Some health-care providers don’t believe in neurodivergence or misunderstand ADHD medication. King explained that appetite suppression can be a side effect, but a good provider will help clients develop strategies for eating instead of revoking meds.

“A lot of neurodivergent people struggle to recognize body cues,” she said, even if they aren’t taking medication. This is called low interoceptive awareness, which inhibits our sense of hunger and thirst. Because I don’t feel hungry throughout the day and have difficulty prioritizing tasks, I might not remember to eat or I skip meals to avoid interruption. Low interoception can cause us to put off a meal for too long, so we tend to reach for quick options rather than nutrient-dense foods. It can also contribute to binge-eating, because we’re less aware of our fullness cues.

King said she was ashamed of binge-eating before she understood the link to her ADHD. Now she checks in with her body throughout the day for hunger and thirst cues. These can include a growling stomach, trouble focusing, exhaustion, restlessness, anger, dry mouth or eyes, lightheadedness, increased heart rate, and more. Practicing intuitive eating might help you identify yours.

Sensory processing issues aren’t just about the food itself. Strong smells from a fridge or trash can, disorganized drawers, small workspaces, or the noise of exhaust fans and cookware might trigger dysregulation. Some might experience emotional outbursts, decision paralysis, disorientation, and the inability to follow steps or complete tasks (including cooking a meal or even getting a snack).

Because extreme hunger can stymie executive-functioning skills, King said, we can prepare ahead. Cut out steps by simplifying food prep and cleanup with precut vegetables, single-serving packages, or disposable cutlery and dishes. Instead of carrying shame about shortcuts, these options should be celebrated for supporting our needs.

In general, when it comes to recovery, King said to “give yourself permission to figure out what works for you.” A coach or therapist can troubleshoot roadblocks or teach new coping skills, and social media is a good place to find peer support.

It is often hard to find answers to questions about our health in a system that doesn’t always recognize our differences and needs. For some of us, disordered eating includes neurodivergent tendencies that our doctors just don’t see — leading to misdiagnoses and treatments that won’t truly help. Discovering ARFID helped me see all areas of my life through a new lens and revealed a path toward the affirmation and support I previously lacked as an autistic person. You deserve accurate answers about your health, too.

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