Me, Myself, as Mommy: Nothing ‘picky’ about neurodiverse child’s food preferences
When kids are small, it’s juggling — literal juggling of their bodies from one location to the next, whether it be your arms, the highchair, car seat, bed, partner’s arms or the floor. There’s no complex schedule planning, mostly the parents trying to make their appointments on time, but anarchy prevails considering you have to anticipate every scenario to avoid baby demolishing the plans. I think the aphorism is “parent plans, baby laughs.”
Helplessness of a baby eventually gives way to muddled plans, demands, opinions and statutes of a slightly autonomous teenager. They have places to be, specific times to be there, precise uniforms and both teachers and peers with the expectation that you will get them where they need to be. In theory, these teens can help. They should be able to get the uniform, they should know the time of the event, and they should be able to communicate their needs. Should. Planning daily movements of multiple people with complex schedules is a whole new ballgame from when my kids were babies. It now takes electronics, color coding, alarms, sticky notes and a general failure of mental well-being. That being so, there is a positive to kids growing up versus being dependent babies — they can feed themselves.
The concept in itself is simple. My child is hungry, give them food. Complexity is added when kids act human. Never was there a time I could force a child to eat something. As infants, they would just push it back out like a vending machine rejecting a crinkly dollar. Threats, bribery and cajoling worked through those toddler years. The best run of my life came when my kids ate to earn the “biggest eater award” which wasn’t actually anything tangible, just me being excited they were the “biggest eater.” Of course, the eldest child alerted the younger kids to the fact the emperor had no clothes; they were actually just eating to, you know, nourish themselves. Everyone has those foods they like, they crave, along with those they avoid or choke down, although adults also understand if they pass a meal, they may not get the next one for a long time. You get what you get and don’t throw a fit is the most important mantra we teach children because that is life for the next 70 years. Sadly, for many children, the food they will eat and won’t is far more complex than I ever imagined until my neurodiverse child was pushed into life.
Bodie’s eating issues exhibited themselves around the same time other signs of autism spectrum disorder (ASD) became apparent. Once again, put another mark in the failure column as it took me a lot of time to recognize this wasn’t my child being difficult, my child trying to be frustrating, my child being picky. No, Bodie’s dietary choices are actually not choices at all, but unconscious messages his brain sends to other parts of his body. He is literally in extreme discomfort when faced with the pressure to eat items not aligned with the brain chemistry. Food can be nails on a chalkboard, only it’s like him being forced to run his own nails down the chalkboard.
ASD is often accompanied by several comorbidities, like eating disorders. Disordered eating can mean restricting food, overeating or inflexible eating patterns like color, timing or texture. Most of us are familiar with anorexia or bulimia, but there are several types of disordered eating. My experience with disordered eating revolves around inflexible eating patterns with a child who cannot tolerate certain textures or sounds of some foods. Initially, it was just a giggle that my child only wanted noodle soup, yogurt, cereal or Eggo waffles. I was fascinated by his natural proclivity to avoid meat. With a diet as restricted as this, it wasn’t long before the Pied Piper came calling. Malnourishment soon sets in; supplements are pivotal and the game changes with the introduction of ADHD medication.
Avoidant restrictive food intake disorder (ARFID) is not unlike other types of disordered eating with the symptom of issues with nourishment, but it’s different in that it’s not based in unhappiness about one’s body. ARFID is based on avoiding food with characteristics that don’t line up with brain messaging. Certain textures, colors, smells and sounds trigger a visceral reaction in the brain, so those living with ARFID avoid that food. Research says at least 1 in 10 people with ASD will experience ARFID. My child, through no logic or bad experience, and for no outward reason, cannot eat meat. This isn’t a “will not,” this is a literal can not. There is no “make him,” there is no active “choice” being made; it is a simple question of what his brain can tolerate. Trust me, I tried the route of thinking he was just “picky” until I realized my sweet boy would rather starve than have his mouth meet certain textures, smells or sounds. He would take the choice to abstain than to eat. What good parent wants that for her kid? It’s a lot simpler, kind and harmonious to meet the needs of a person given no choice.
Besides the patience and understanding of those surrounding people with ARFID, there are other actions one can take to help accommodate these dietary issues. First, for parents unsure if their child is just “picky” or dealing with ARFID, you can get a diagnosis through several places like the Neurobehavioral Center for Growth. Be cautious about whether you’re going somewhere reputable, avoiding a diagnosis factory that churns out labels just to get money. Early Intervention or Utah Parent Center are also great resources. Next, check out occupational therapy as a means to lessen the symptoms of disordered eating. These trained professionals have several programs to help children cope with their dietary issues, including the most important strategy of advocating for themselves. Kids are people, and so many big people forget this. The last thing I would suggest is speaking with your child’s teacher and administration to help that kid have a successful lunch hour in an environment conducive to eating. I’m grateful to my child’s school’s willingness to work with him. Hanger is never good, especially in a classroom.
It’s easy for me to lament the difficulties of raising complex children. It’s easy for some to shrug and say kids today are spoiled (although, I must note, we’re the generation of participation trophies, not this one) and should be grateful to have food, but they’re mostly likely from the highly reputable “school of hard knocks.” In actual reality, it’s far more difficult to be the person with disordered eating. It’s probably miserable to have people judge and badger over food instead of meeting with understanding and education. Life with children has to be hard; the difficulties are what makes the good moments stand out, be memorable. Understanding the minds of our children is the biggest battle, but once we get it, things get easier — at least until they change that mind.
Meg Sanders worked in broadcast journalism for over a decade but has since turned her life around to stay closer to home in Ogden. Her three children keep her indentured as a taxi driver, stylist and sanitation worker. In her free time, she likes to read, write, lift weights and go to concerts with her husband of 17 years.