“My son won’t take his vitamins, he won’t eat any vegetables or fruit, and I can’t take him anywhere.” This comment, in many variations, is something all of us working with children on the autism spectrum often hear, and work very hard to overcome. While there are many theories attempting to explain this resistance, regardless, in order to successfully provide treatment, we need to be able to implement changes in his diet and life circumstances. The offered theories include sensory defensiveness, addiction/allergy, pain, sympathetic dominance (with impaired digestive receptivity/processing), obsessive/compulsive issues, or “autism,” and may be helpful in ascertaining how to best approach a given child.
It’s as if these children are fighting to maintain the status quo, and, in a way, this may often be the case. But the status quo is only more of the same: stimming, isolation, disconnection, and ongoing “autism.” One of the cardinal features of autism is inflexibility or resistance to change. By helping him to break through this resistance, we can offer him a new experience of the world. And so we need to be willing to confront the status quo and teach our children to stretch.
I believe that we do a great service to our children in teaching them to stretch, have new experiences, eat new foods, and overcome fears and habits. As a consequence, I encourage parents to confront their child’s inflexibility, gently place new demands on the child, and thereby help him to learn adaptability and resilience. Remember, resilience does not come from doing things the easy way or having an easy time of it, but rather from struggling and overcoming resistance.
Life is often such a challenge for them, as they may have great struggles even in getting simple needs met. I have the sense that for some children, the world is not perceived as a friendly place, as they may be unable to accurately sense peoples’ intentions in offering them help. We parents feel our children’s distress, and aim to protect them from pain and struggle, and so may succumb to their resistance to change, while they need to change in order to heal. In fact, resistance to change is a primary symptom of autism, often resulting in poor nutrition, restricted learning opportunities, and severe limitation of family mobility and activities of daily life. Siblings in particular, may be powerfully impacted by these restrictions and limitations. And so, it is to the benefit of our family and our autistic child to teach him to stretch, become more flexible, accept new experiences, and thus begin to change and release the whole family from his rigidity.
The particular circumstance which comes strongly to mind is the struggle to get children to accept nutritional supplements, a new diet, or a B12 shot. They don’t understand the need to swallow the awful tasting herb, overcome the fear and discomfort of a shot, or accept a new food, and they refuse. If they are allowed this veto by their parents, they will be deprived of potentially valuable treatments, therapies which cannot be “sugar coated” to make them palatable.
In some cases, it is possible to teach child to swallow pills. The best method I have found is to first identify a strong reward, and let him know he’ll get it for doing what you ask. Have him chew up a bite of banana (works best because slimy—helps lubricate the swallowing), wait to swallow it, and put a small object such as a grain of uncooked rice in his mouth to be swallowed. Start with an object so small he can’t fail. Reward success, and decide whether to continue or wait until the next (generally better) to go further. Next session, he has to swallow the previous day’s object plus something slightly larger to receive his reward. Continue working up in size until he can swallow the equivalent of a small capsule. Then proceed to capsules. One mom (thank you, Chris for the idea!) used pieces of coffee beans, which could be incrementally increased without changing color/texture, vs using rice, then orange dal, then green lentil succession. It is important to use uncooked rice or dal or lentil, so that you can hear whether he crunched it or not (chewing isn’t acceptable). Other parents have used TicTacs, which most kids are willing to put into their mouths without a fuss (and hopefully can tolerate the corn syrup and artificially flavor). Know, however, that some children won’t learn by this method, and need to have their vitamins/minerals/herbs/enzymes/etc.presented in a medicine syringe with a pleasant flavor (such as juice concentrate, honey, maple syrup) added to somewhat subdue the unpleasant taste. If you think of it as medicine which needs to go down, you’ll be more persistent. If a dose is spit out, give a repeat, and be willing to repeat many times before you prevail.
And so I encourage parents to recognize their own authority; “this is my child;” decide what needs to be done, what needs to happen in your child’s life. Implement needed changes, and trust your love and intention; even if you feel like you’re abusing him by imposing your regimen on him, he will know that your wish is to help him. In the case of nutritional supplements and diets, consult the TACA Journey Guide or website (www.tacanow.org) or a clinical nutritionist (who specializes in autism) for lots of good ideas, your child’s therapists for specific interventions and incentives to help ease the battle, and your doctor for priorities to be addressed.
May your parental journey be fulfilling and filled with love and healing.
John A Green III MD