"She's not typical:" How one Muncie family navigates autism and food struggles

Stella Williams flying her kite at Morrow’s Meadow in Yorktown, Indiana. Williams was diagnosed with autism at age 3. Dana Williams, Photo provided.
Stella Williams flying her kite at Morrow’s Meadow in Yorktown, Indiana. Williams was diagnosed with autism at age 3. Dana Williams, Photo provided.

April brings into focus National Autism Awareness Month in the US, but there is one condition closely linked that few people know about — avoidant/restrictive food intake disorder (ARFID). 

ARFID is when a person eats a small amount or only certain types of food. The condition affects many precocious teenagers, including Muncie native Stella Williams, who was diagnosed with autism at the age of three. 

According to the Centers for Disease Control (CDC), 1 in 36 children across the U.S. were diagnosed with autism in 2020.

 “You have a good cry because it hits you, ‘My kid is not going to have a typical life,’ and you worry, ‘What is that going to mean?” said Dana Williams, mother of Stella. 

Stella loves to produce music on her iPad and absorb language. She even learned to read at three.

Doctors gave Stella’s parents a laundry list of things Stella would never do. While she surpassed all of it, food remains a struggle. 

Dana said Stella has a few safe foods. She likes to drink V8 V-Fusion juice, eat protein bars and goldfish, and like most kids, she enjoys candy — specifically chocolate. 

ARFID is more commonly noticed in the autistic community compared to the general population. The National Library of Medicine estimates it affects between 12.5 percent to 33.3 percent of individuals with autism. 

There are many reasons for this correlation, including little interest in eating food due to its taste, texture or smell. Additionally, individuals with this disorder might fear the adverse consequences of eating like gagging or choking on food.

ARFID is relatively new. The American Psychiatric Association added the condition to its “Feeding and Eating Disorders” section of the DSM-5 in 2013. 

Laura Seiverling, assistant professor of special education at Ball State University’s Department of Applied Behavior Analysis, has been a specialist in pediatric feeding disorders for nearly 20 years.
She said it makes sense that ARFID children are more likely to fall on the autism spectrum.

“A large portion of the children who are going to meet the criteria for ARFID, fall on the autism spectrum disorder because selective eating is very prevalent in that clinical population,”  Seiverling said.

Dana said it has been difficult to get a formal diagnosis for ARFID for her daughter and has resorted to watching videos on the condition to best support Stella. There aren’t any practicing doctors who specialize in ARFID in Muncie, Indiana, which has been a struggle for her family. 

“I just want to make sure that she's healthy and is getting what she needs nutritionally. The food therapy field feels like it has not caught up,” Dana said. 

The struggle is mutual.

“It's a struggle for a lot of these clinicians because they just don't have the training. That’s when a behavior analyst’s skillset becomes helpful. We need to learn how to work together,” Seiverling said.

Stella Williams, 3, a few days before her autism diagnosis. According to the CDC, autism is almost four times more commonly found in male children than female children. Dana Williams, Photo provided.

Seiverling advocates for behavioral feeding interventions, such as stimulus feeding, which can help individuals who suffer from ARFID. She even published a book for parents and providers to use as a manual to deal with selective eating problems. 

“The way you overcome the sensory issues is through habituation. The child gets repeated exposure to various types of textures and temperatures and whatever is most challenging for the child,” Seiverling said. 

She encourages sensory integration in small doses.

“We start with a tiny clump size piece of foods that are often most similar to the foods that are in the child's repertoire, and through repeated exposure paired with positive reinforcement. [The child] learns to build up a tolerance and even a preference for some of the foods that are introduced,” she said.

Dana said she and her husband work hard to get Stella to try different foods. She also said they work together to get Stella to explain what she dislikes about certain foods, but they do not pressure her to finish anything.

Most of Stella’s nutrition comes from Ensure, a line of ready-to-drink nutrition consumed as a meal replacement. On average, she drinks six bottles a day of the brand’s chocolate flavor.

Medicaid covers Stella’s prescription through Indiana’s Family Supports Home and Community-Based Services (HCBS) waiver. Dana said it saves their single-income household around $400 a month. 

The most important thing to Dana is that she is along for the ride in Stella’s development. She said she wants to “truly know” her daughter: her interests, the source of her happiness, what makes her laugh and her talents. 

“She was still the same person she was the day before the diagnosis. She didn't change because they diagnosed her with autism,” Dana said. “She’s not typical.” 

For more information about avoidant restrictive food intake disorder and how it affects children with autism visit www.kidshealth.org.  

Contact Mesgana Waiss with comments awaiss@bsu.edu.


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