Stephen Mark Shore is a 58-year-old autistic professor at Adelphi University. He says this about how he processed food as a child:
“Brown or black food wouldn’t be eaten, as I insisted that they were poisonous. Canned asparagus was intolerable due to its slimy texture, and I didn’t eat tomatoes for a year after a cherry tomato had burst in my mouth while I was eating it. The sensory stimulation of having that small piece of fruit explode in my mouth was too much to bear and I was not going to take any chances of that happening again. Carrots in a green salad and celery in tuna fish salad are still intolerable to me because the contrast in texture between carrots or celery and salad or tuna fish is too great. However, I enjoy eating celery and baby carrots by themselves. Often as a child, and less now, I would eat things serially, finishing one item on the plate before going on to the next.” [From his book: Beyond the wall : personal experiences with autism and Asperger syndrome]
We autism grandparents frequently have occasion to eat with, and/or serve meals to, our grandchildren. And we often have trouble understanding why they won’t eat this, won’t try that, and won’t even taste the other. Even when we demonstrate how much WE like it. Even when we do time-proven tricks like flying the airplane into the hangar. And even when we offer rewards.
My granddaughter, now 4 and now mostly free of eating difficulties, had serious eating disorders (and a feeding tube) for a long time. It was a major accomplishment to get her to open her mouth for a tiny spoonful of food. We didn’t understand, we didn’t have solutions, we consulted specialists, and we tried all sorts of things. I have no idea whether it was any one thing or any certain therapy that “cured” her, but my guess is that in her case it was mostly a combination of persistence and time.
I can remember thinking, “When she gets hungry enough she’ll eat!” But I am now finally aware that eating disorders are common among persons with autism. And the term “eating disorder” can refer to many different things ranging from simple aversions to, and preferences for, certain foods, to extremely harmful things like anorexia nervosa, pica (eating non-foods such as cigarettes, paper, dirt, etc.), rumination (regurgitating food and re-chewing it), rapid eating (including binging, and accompanied by the danger of aspiration or choking), and on and on.
Autism can be accompanied by a whole range of things that can have a negative effect on eating, including “abnormal” sensory experiences that relate to sight, taste, smell, and texture – any or all of which can cause an aversion to certain foods, and even a perception that certain foods are harmful or dangerous. I found one research site that says that 69% of children with autism are unwilling to try new foods, and that 46% have rituals regarding eating.
While there may be no obvious therapy for, or easy solution to, or simple understanding of, any eating disorder, those of us who are autism grandparents can be helpful in three fundamental ways:
We can realize that it’s probably not our cooking or our menu or our presentation that has resulted in a negative eating reaction from our grandchild. We can understand that it’s likely a manifestation of our grandchild’s unique type of autism. And we can act in a loving and understanding manner rather than the opposite.
We can make “eating” a priority topic for ongoing discussion with our grandchild’s parents: keeping them informed and welcoming their advice.
We can happily cheer and congratulate them each time there is even the slightest bit of “progress.”
Last week, for the first time, my granddaughter ate an apple by herself – not sliced, not peeled, not being held by us between bites. She did the whole thing by herself. And today she ate another one! One thing about being an autism grandparent is that you receive so much joy from so many things that other grandparents likely take for granted.