National Autism Awareness Month is in the spotlight every April in the United States, but there's one closely related condition that most people don't know about. It is avoidant/restrictive food intake disorder (ARFID).
ARFID occurs when a person eats only small amounts of food, or only certain types of food. The condition affects many precocious teens, including Muncie native Stella Williams, who was diagnosed with autism at age 3.
According to the Centers for Disease Control (CDC), 1 in 36 children in the United States was diagnosed with autism in 2020.
“I cry a lot because I think, 'My child is not going to have a normal life,' and I worry, 'What does that mean?'” said Stella's mother, Dana Williams.
Stella loves creating music and absorbing languages on her iPad. She also learned to read and write at the age of three.
Doctors gave Stella's parents an extensive list of things Stella would never do. Although she has overcome everything, eating is still difficult.
Dana said Stella has some safe foods. She drinks her V8 V-Fusion juice and she likes to eat protein bars and goldfish. And she, like most children, likes candy, especially chocolate.
ARFID is more commonly noted in the autism community compared to the general population. The National Library of Medicine estimates that between 12.5% and 33.3% of people with autism have the disease.
There are various reasons for this correlation, including having little interest in eating food because of its taste, texture, or smell. Additionally, people with this disorder may fear negative effects from eating, such as choking or choking on food.
ARFID is relatively new. The American Psychiatric Association added this condition to the “Eating Disorders” section of the DSM-5 in 2013.
Laura Seiberling, assistant professor of special education in the School of Applied Behavior Analysis at Ball State University, has been an expert in pediatric eating disorders for nearly 20 years.
She said it's no surprise that children with ARFID are more likely to fall on the autism spectrum.
“The majority of children who would meet criteria for ARFID have autism spectrum disorder because selective feeding is highly prevalent in this clinical population,” Dr. Seiberling says. said.
Dana said it was difficult to receive an official diagnosis of her daughter's ARFID, and she has resorted to watching videos on the condition that she provides the best support for Stella. Her family is struggling because there are no medical practitioners in Muncie, Indiana, who specialize in ARFID.
“I just want to make sure she's healthy and getting the nutrition she needs. I feel like the diet field hasn't caught up,” Dana said.
The struggle is mutual.
“A lot of clinicians struggle because they don't have the training. That's where the behavioral analyst skill set comes in. We need to learn how to work together,” Seiberling said. .
Stella Williams, 3, a few days before she was diagnosed with autism. According to the CDC, autism is nearly four times more common in boys than girls. Photo provided by Dana Williams.
Seiverling advocates eating behavior interventions, such as stimulated feeding, that can help individuals suffering from ARFID. She has also published a book that her parents and health care providers can use as a manual for dealing with selective feeding issues.
“The way to overcome sensory problems is through habituation. Children are repeatedly exposed to things that are most difficult for them, such as different types of textures and temperatures,” Seiberling said.
She promotes sensory integration in small doses.
“We start with small chunk-sized foods that closely resemble foods in a child's repertoire and do so through repeated exposure combined with positive reinforcement. [The child] “They develop a tolerance and even a preference for some of the foods they are introduced to,” she said.
Dana said she and her husband work hard to get Stella to try different foods. She also said that although she does help Stella explain what she doesn't like about certain foods, she doesn't pressure her to finish anything. she said.
The majority of Stella's nutrition comes from Ensure, a line of ready-to-drink nutritional products that are consumed as meal replacements. On average, she drinks 6 bottles of this brand's chocolate flavor a day.
Medicaid will cover Stella's prescriptions through Indiana's Family Support Home and Community Based Services (HCBS) waiver. Dana said this would save a single-income household about $400 a month.
The most important thing for Dana is that she supports Stella's development. She said she wanted to “really know” about her daughter's interests, sources of happiness, things that make her laugh, and her talents.
“She remained the same person she was the day before her diagnosis. Being diagnosed with autism didn't change her,” Dana said. “She's not typical.”
To learn more about avoidant restrictive food intake disorder and how it affects children with autism, visit www.kidshealth.org.
Contact Mesgana Waiss with comments at awaiss@bsu.edu.