Categories: Feature Story Date: Feb 25, 2016 Title: Not Just ‘Picky’
By Aaron Gifford
Wendy McCue jokingly calls mealtime “chicken nuggets and fries hell.”
Boena uchowska | Hemera photo
Wendy McCue jokingly calls mealtime “chicken nuggets and fries hell.”
For the time being, those are the only things her autistic but high-functioning 6-year-old son, Aidan, wants for supper. The first-grader in the West Genesee district is doing well in school, loves to read and is making slow strides in his social development, but the dinner table can be a hostile place for him.
Aidan began showing symptoms of autism at 18 months and was officially diagnosed before age 3. As an infant and toddler, he enjoyed a much broader range of foods, including pasta and vegetables. These days, he won’t venture far past peanut butter and jelly, apple juice, fruit, water, milk, plain pancakes, plain doughnuts, plain potato chips, popcorn without butter and, of course, chicken nuggets and fries.
Only recently did Aidan step way outside his comfort zone and try maple syrup and ketchup. His mom considers that a breakthrough; the boy previously refused anything he considered “messy.”
Another recent breakthrough for Aidan: At school he ate a plain meatball, although he still won’t try them at home. Occasionally Aidan will buy a lunch in the cafeteria because he enjoys socializing while going through the line and carrying the tray, but usually the school food goes untouched.
“We just take it one day at a time,” McCue says. “But we don’t go out to eat unless we can get you-know-what.”
Autism is a neurodevelopmental disorder that impairs a child’s ability to communicate and interact with others. Impairment ranges over a spectrum, so it’s also referred to as autism spectrum disorder or ASD. Autistic people who are considered low functioning may be unable to speak, while those considered high functioning may still be socially impaired.
Picky eating is a common childhood behavior, but the food aversions of children with ASD or sensory processing disorder can be particularly intense and disruptive to children and their families. The advocacy organization Autism Speaks last year pointed to two studies that documented the effects of aversions on families.
“It’s critical that clinicians and dietitians understand the unique issues that families of children with autism face during mealtimes,” says Carol Curtin, co-author of one of the studies. “(They need) to offer families support in addressing these challenges.”
The sensory functions are different in autistic children, which contributes to food aversions, explains Carroll Grant, director of the Margaret L. Williams Developmental Evaluation Center at SUNY Upstate Medical University in Syracuse. Currently about 50 percent of the children tested for autism there are confirmed positive.
“Smell, taste, seeing things, touching things: That’s where food aversion comes in,” Grant says. “Their personality likes to keep things the same. Feeding becomes an issue.”
Grant, who has a Ph.D. and is a licensed school psychologist, advises parents of children with food aversions to rule out any food allergies early on and then document what their kids like and don’t like. If the child enjoys mashed potatoes, for example, maybe the mushy texture is the key feature, so why not try oatmeal as well? If he loves chicken nuggets, maybe crispy fried vegetables would also work. If the child likes fried foods, try transitioning to things that are oven-baked. Beyond texture, it is also worth considering the similarities in the colors and even the sizes of foods.
Grant cautions against ruling out certain foods or ideas based on what parents might hear from other parents or what they might read on a website. By the same logic, she says, parents should not be so quick to consider nutritional supplements or over-the-counter medications without talking to a physician first.
“There’s a lot of misinformation out there,” Grant says, “but if you’re a parent, you’re going to try anything. There is no universal panacea.”
Moreover, Grant adds, autistic children, just like anyone else, change over time. Kids who once hated vegetables growing up become vegetarians as adults.
And with all the issues autistic children and their parents have to face, perhaps mealtime should not be one of them, Grant says.
“Pick your battles,” she says. “Mealtime should be fun, family-oriented and enjoyable. There is no data showing (autistic kids with food aversions) are not healthy. If a child is healthy and growing, maybe it’s OK.”
Emily Kuschner, a clinical psychologist at the Center for Autism Research at the Children’s Hospital of Philadelphia, addressed the topic of picky eaters on the Autism Speaks website. She writes that up to 70 percent of parents with children on the autism spectrum have reported excessively narrow eating habits.
She suggests making a game out of approaching new foods first, challenging children to see, touch and smell a food to possibly heighten their curiosity in tasting it. Make the creation of food fun, such as forming a face on a pizza using vegetables. Parents or caregivers can also try mixing a new food with a familiar one; challenge the child to add one “mystery” ingredient of his or her choice to a favorite dish.
Michael Davis photo
And be sure to offer a wide variety of items whenever possible. For example, challenge them to eat a vegetable, but offer a variety of tastes, textures and colors by putting out broccoli, carrots, cherry tomatoes and other items.
But don’t reward a child with ice cream for eating vegetables. Kuschner calls such rewards a quick fix that might work a few times but do little to teach the child about enjoying new foods and forming flexible, healthy eating habits.
Autism Speaks recently launched a research project, “Building Up Food Flexibility and Exposure Treatment (BUFFET),” aimed at finding more effective treatments for older, cognitively higher-functioning children with autism spectrum disorder. Under this initiative, parents, therapists and nutritionists working together at the Children’s Hospital of Philadelphia will focus on the areas of managing the anxieties brought on by food, scripts for being flexible with food, food sensory education, and taste identification training. The goal is to eventually publish a treatment manual parents can use in the home.
At the Family Behavioral Analysis Clinic at Upstate Golisano Children’s Hospital in Syracuse, behavior analyst Heather Kadey spends much of her time working with children who have food aversions. In her field, creativity is essential in finding solutions that work for the affected children and their families.
While an aversion may appear to be related to the appearance of a food or taste, texture or smell, it’s not unusual for an autistic child to change his mind about a food if he tries it in a different way or a different setting. Things as simple as using a spoon instead of a fork, or where a chair is placed at the table, could make a difference in the child’s behavior, Kadey says.
“You have to try anything,” she says. “Maybe have them pick up a spoon with the food (already) on it,” as opposed to an empty spoon with the bowl of food in front of him or her.
Kadey say most of the variations attempted at the clinic and at home have not worked, and parents get frustrated. Patience, perseverance and understanding are crucial elements in the ongoing effort to expand a child’s diet.
“Every child is different,” she says. “Parents feel like they have failed when they tried so hard. The important thing for people to know is, these are not your typical picky eaters. People need to be sensitive to it and understand what parents are going through.”
For Wendy McCue, the behavior of other adults—an eye roll or comment about healthy meals—can be especially hurtful. McCue has not sought professional help for Aidan’s aversions because he is of normal height and weight for his age and remains physically active. She feels her gentle approach to offering new foods is the best plan of action right now.
“You can’t focus on other people looking down on you,” she says. “Do what’s right for your child and your family.”
Jean Leiker, vice president of the Central New York Autism Society and mother of an autistic 13-year-old boy, says her son, Bradley, had serious food aversions when he was younger. He stuck with baby food longer than most infants and for a short time insisted on eating only crackers. But Leiker never gave up on introducing new foods to Bradley. For him, combining food offerings with his regular speech therapy proved to be a successful variation.
“When he was trying to get his mouth moving more, he was willing to try new things,” Leiker says. “It was speech therapy made fun.”
The Leikers refused to allow meals to become chaotic. Offering new foods with familiar foods was another technique that worked for them. Now, as a teenager, Bradley enjoys a well-balanced diet and eats just about anything put in front of him, his mother says.
“Parents of children with autism have a lot of patience,” she says. “If you weren’t a patient person, you learn to become one and to do your best with everything.”
Aaron Gifford is an award-winning writer who lives in Cazenovia with his wife and two children.