It’s day four of not even a crumb of food. With a belly containing nothing but PediaSure shake for the last four days, my son sat across the table from me with a familiar look in his eye. Though he had no spoken words at the time, I knew exactly what he was thinking – “No way am I eating that”.
I tried all the go-tos. Pizza. Chicken nuggets. COOKIES. Not a thing. For a reason unbeknownst to me, my child was no longer eating any of the foods that he once ate without question. I was above no tactic by this point. I tried discipline. I tried rewards. I tried offering him every cent to my name. Nothing.
I remember finding so much humor and reality in a Louis C.K. stand-up where talks about how his child wouldn’t eat. Between the profanity (just as a fair warning if you look it up), he describes the deep feeling of panic and anxiety in your gut when your child refuses to eat. He screams, “IF YOU’RE SKINNY, I GO TO JAIL!!”
There truly is something within the soul of a parent that squirms in absolute agony when their child will not eat. Even if your child is eating a very restricted array of foods, odds are, you’ve tried everything you can think of. The generation before you has probably given the advice “He won’t starve. If he’s hungry, he’ll eat”
For children on the spectrum, this completely invalid advice. They may as well give us advice on how to operate a rotary phone. Times have changed, and children on the spectrum (specifically ones that have sensory defensiveness, oral motor issues, or swallowing deficits) will absolutely starve. If you’re in game of chicken (no pun intended) with your child on who will back down first, you will not win. I can say with complete certainty that if it was between starvation and consuming a piece of foreign food, my son would have chosen to go full hunger strike.
This is a commonly discussed topic in the autism world. It’s a repeating trend that children with a diagnosis will prefer either bland-tasting crunchy foods, or foods with the mysterious orange dusting (Doritos, Cheetos, etc), if they eat anything consistently at all. There are several speculations as to why this is, ranging from medical explanations to behavioral. I’ve seen it in children I’ve worked with as clients, which brought me nostalgic memories of raising my own child.
A saving grace in my household was Feeding Therapy – a therapy that takes into account any physiological barriers to eating foods and takes a behavioral approach to intervention. When my son received feeding therapy, it was provided by his Speech and Language Pathologist who had specific training in food acceptance. Other providers now include Occupational Therapists and Board Certified Behavior Analysts.
My son’s treatment addressed two recurring issues: the fact that he wasn’t accepting food (behavioral) and the fact that he had poor oral motor control (physiological). He wasn’t chewing properly, which severely limited the foods that he could successfully eat. We worked on building up his skills in chewing using chewy tubes and we worked on his food acceptance by using a very behavior-based protocol, carefully mapped out by research.
Fast forward to today, and my son (after keeping up with the strategies from feeding therapy) eats a very wide variety of foods, including fruits, vegetables, and proteins. We restrict gluten from his diet and limit dairy – instead, he eats nut-based alternatives. Since this has been the case, I’ve noticed drastic changes in his overall mood, behavior and verbal communication. He went from chronic sinus and ear infections to being sick once this year and recovering within a few days. He has healthier energy – not the “tear the house apart” kind, but the “let’s play Uno” kind.
Of All Treatment Options…Why Feeding Therapy?
What we eat is what makes our world go round, and poor eating paired with lack of gross motor play is a growing epidemic in our culture. This is more than just an idea for a cool Netflix documentary or a pitch to keep PE as a special in public schooling. This is a very real and very serious issue. Not only is obesity on the rise, but so are more behavioral disorders than we could’ve ever imagined. We go on rampages against every possible boogey-man out there that could’ve potentially caused autism, but what we don’t do is critically evaluate the very legal substances within our own households that could be adding gasoline to the flame.
While I do not claim to know exactly what causes autism, I do know (and have had too much data through experience showing) that poor nutrition causes inflammation in the body and the brain, which leads to very serious behavioral ramifications. Unfortunately, the Standard American Diet is chock full of all those foods that love to create inflammation. Not just the foods we know to look out for (sugars, dyes, preservatives), but some of the ones we have grown up on (gluten, dairy, grains).
I give these warnings, even though I have first-hand experience in the fact that raising a child on the spectrum comes with so many targets on your radar that sometimes, it’s just going to have to suffice that your child eats anything. I have been there, and there’s not even an ounce of shame in being there. The point is getting to a point where we find the supports that are available to not be there long-term.
The call to action to intervene on nutrition is overwhelming, and when you’re already considering how to intervene on adaptive skills, play and social skills, language skills…feeding seems to be at the bottom of the food chain (so to speak). The reality is, though, that improvement in nutrition will hands down improve the other areas you’re working on as well. That doesn’t mean you have to add another area in your child’s life that you have to put your foot down on. It means that seeking out professionals who can assist in this aspect of your child’s life can have seriously dramatically positive outcomes for your family as a whole.
I write this blog for a myriad of reasons:
First – I write as a shout out to parents who have felt the panic over their child not eating or eating poorly. That feeling is because you understand the gravity of nutrition and you want the best for your child. You’ve already reached the most important part of the process, which is understanding the need to do something about it.
Second – To implore parents to check in with what options are out there for improving the nutrition of our children (both on and off the spectrum).
Here’s what to look for when considering feeding therapy:
1. Consult a Pediatrician
You’ll want to get a baseline of what children should be eating on a developmental basis. You’ll also want to get preliminary medical advice on potential barriers to eating. Bring all the observational insight you can. What does your child do with food? Does he resist putting it in his mouth? Does he choke or gag? Does food fall out of his mouth? Does he spit it out? Does he show frustration when it’s time to eat? All of these observations matter, because they could point toward potential reasons as to why feeding is problematic.
2. Get Referrals
Ask the pediatrician for referrals based on the findings of your visit. It is possible your child will need to be referred for further testing in regards to swallowing patterns or gastrointestinal issues. If no further testing is recommended, you’ll need an evaluation from an Occupational Therapist or Board Certified Behavior Analyst. Ensure that whichever professional you select has experience in feeding therapy (not all will have the additional training or resources involved).
3. Ensure that Therapy is Research-Based
The safest and most effective feeding therapy interventions will be heavily based on empirical research – meaning that they have been tested and proven to be effective. They also ensure that ethical guidelines are followed in the process. Feeding therapy can be intense, and it’s critical to have very strict adherence to research-based practices to ensure that the outcomes prove positive for the child. The goal is making feeding an overall less aversive experience, which takes time, persistence, patience and dedication.
4. Follow Up at Home
Make sure you are able to observe feeding therapy. Get coaching on how to do it yourself comfortably. The great thing about feeding therapy is that, when done thoroughly, feeding becomes a much more enjoyable experience for all. The issue that I believe families commonly face is that sessions can be as little as once per week for an hour. I don’t know about your child, but my child could definitely hold out and refuse to eat for an hour once a week. When I was trained on the protocol and implemented it in the home environment as well, it became much more likely that my son would actually participate. I am a huge believer in parents being involved in therapy, because what makes all the difference in a child’s life is consistency. The parent-child relationship is the most crucial, regardless of the therapist-child relationship.
I created Bloom Health because sometimes, you need professional advice. Sometimes you need parent-to-parent perspective. Sometimes, you just need to talk things out with someone who gets it. Regardless of what you may be needing as a parent, Bloom Health is here to help. We offer continuous free resources, but also are available for consultation. Visit us at www.bloomhealth.org, or email me directly at email@example.com. I would love to share any insight or resources I have with you!
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