8-Year-Old Shares Her Eating Disorder Journey With Her 1.3 Million Followers On Instagram

Hannah discusses her battle with Avoidant Restrictive Food Intake Disorder (ARFID).

Fact checked by Sarah Scott

When people think of eating disorders, they're often familiar with bulimia and anorexia nervosa, but there's another, lesser-known eating disorder called Avoidant Restrictive Food Intake Disorder, (ARFID) that causes kids (and adults) to fear certain foods and label other foods safe foods. To help bring awareness to this eating disorder, people like 8-year-old Hannah—along with her mother—are sharing the struggles someone with ARFID experiences.

Hannah regularly posts to Instagram about her eating disorder and the challenges she faces when she tries new foods. In her videos for her 1.3 million followers, she not only takes three bites of new foods, but she also regularly shares the things she is learning in therapy and discusses the fear and anxiety she experiences when trying new foods.

Many of Hannah's videos show her trying a new food and giving it a rating on a scale of 1-10. She will then indicate whether she would be willing to eat that food again.

Sharing this type of information is vital for spreading awareness—especially since ARFID is often missed, overlooked, or mistakenly referred to as picky eating. But it's so much more than picky eating—and something that should be on the radar for any parent with a "picky eater."

What Is ARFID?

ARFID is a feeding disorder where people avoid or restrict foods to the point that they experience serious consequences like weight loss, nutritional deficiencies, and psychosocial interruptions, explains Amy Henke, PsyD, a psychologist with Children's Hospital New Orleans. In other words, they may not attend sleepovers because of limited food choices, do not want to go to restaurants, and cannot go on vacation because the food is not the same.

"Some people have symptoms that are so severe they might depend on tube feedings to stay alive," Henke says. "People with ARFID are generally limited in their food preferences and may have strong sensitivities to food textures, tastes, colors, or smells. They also are sometimes afraid of choking or getting sick. [They may even] have low interest in food and feel less hungry than other people."

Due to their restrictive eating habits, kids with ARFID also may experience low mood, irritability, anxiety, reduced concentration, cognitive inflexibility, and social isolation, says Kim Anderson, PhD, CEDS, executive director of the Eating Recovery Center. They also may be embarrassed, unable to eat what is offered, and faced with uncomfortable questions about their eating.

"Children [also] may avoid eating at friends’ homes or they may decline party invitations and sleepovers," she says. "This can lead to feelings of isolation, loneliness, and may even interfere with social development."

Related: How to Help a Child With an Eating Disorder

What Are the Signs and Symptoms of ARFID?

Unlike other eating disorders, the eating behaviors with ARFID are unrelated to concerns with body image and are not driven by a desire for weight loss or a fear of weight gain, Anderson says. Instead, you may notice early feeding difficulties, lack of interest in food, and sensory sensitivities where your child experiences taste, smells, and textures very intensely.

"However, not all individuals with ARFID start as selective eaters," she adds. "Sometimes, a negative experience with food such as choking, vomiting, gastrointestinal discomfort, or an allergic reaction creates fear of certain foods—or even eating in general—which also may lead to the development of ARFID."

To be diagnosed with ARFID, kids usually have restrictive or avoidant eating behaviors that impact their functioning and are not based on weight, Anderson says. "ARFID occurs in all body types across the weight spectrum; people at higher weights may be at risk of being underdiagnosed."

Symptoms of ARFID

Knowing the warning signs and symptoms of ARFID is an important first step in seeking care for this type of eating disorder, says Anderson. Here are symptoms to watch for:

• Lack of interest in food

• Avoiding foods due to certain sensory properties like texture, smell, or appearance

• Refusing to try new foods

• Requiring food to be prepared a specific way

• Feeling afraid to eat due to fear of possible allergic reactions, choking, or vomiting

• Ritualistic eating behavior such as eating food in a specific order

• Avoidance of social situations involving meals

• Weight loss or nutritional deficiencies

• Increase in selective eating that significantly limits the range of “acceptable” food

How ARFID Differs From Picky Eating

It's not uncommon to confuse picky eating and ARFID; but the two are not the same thing. Though the lines can be blurred, there are ways to differentiate between the two, Anderson says. "Unlike picky eating, ARFID is not a stage or a normal part of development. It’s not even 'extreme picky eating.' It’s a diagnosable and treatable eating disorder."

Although both picky eaters and kids with ARFID have a reduced variety of preferred foods, picky eaters typically possess a much larger range of food they are willing to eat, she says. With ARFID, children may eliminate entire food groups and refuse to eat regardless of hunger or health concerns.

"In general, the extreme nature of the reactions and behaviors are something that can help distinguish picky eating from ARFID," Anderson says. "For children with ARFID, their responses to certain foods are much more than general dislike and the changes in eating behavior and weight can be drastic. For example, a child who experienced a choking incident may decide they will avoid all solid food—consuming only liquids."

Picky eating also does not usually impact health, growth, and development. Many children will outgrow picky eating and can enjoy social events involving food, says Jill Hartrich, LCSW, a child therapist, parenting expert, and owner at Foundations Therapy.

"[But] children with ARFID experience anxiety around events involving food. While a birthday party at a pizza place may be ideal for most kids, the idea of sharing a meal with others can cause extreme distress for a child with ARFID," she adds.

Can Picky Eating Morph Into ARFID?

Picky eating is common in kids, can be part of typical development, and usually resolves with time, says Anderson. "However, for a small subgroup of children, picky eating continues past adolescence and into adulthood. Those who continue to eat from a small range of foods beyond this period are at a higher risk for developing ARFID."

That said, not all people with ARFID start out as picky eaters. A negative experience with food can cause people to fear certain foods or eating in general. This, in turn, may lead to the development of ARFID, Anderson says.

What Parents Can Do

Because ARFID is a newer diagnosis, research around it is still evolving, says Hartrich. There are several evidence-based treatments to support children with ARFID, though. Most of these therapies focus on addressing the underlying anxiety around feared food.

"Therapies such as cognitive behavioral therapy, specifically tailored to children with ARFID, can be incredibly effective," Hartrich adds.

Therapy should promote gradual exposure to the child's feared foods, which is the premise of 8-year-old Hannah's Instagram account. Generally, this exposure entails supporting a child to gradually and systematically try foods they avoid, Hartrich says. Family therapy that focuses on removing parental accommodations can also be helpful.

Because identification of ARFID and early intervention are important, Henke says parents should trust their instincts if they believe that their child's behavior is more than just picky eating. Talk to your child's pediatrician and consider consultation with a pediatric dietician and psychologists who work with feeding or eating disorders. Even occupational or speech therapists can play a role in treating ARFID.

"It’s important to know that you are not alone and there are many resources to support you and your family," Anderson says.

Related: To My Daughter, Please Don't Inherit My Eating Disorder

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