My child is a picky eater. This is a problem for many children with autism. I talked about it here and it generated quite a bit of discussion. Not only is my son picky about the food he eats, but he is picky about how he eats it.
ABA started a program for him called “new foods” but that program was placed on hold while some other areas concerning socialization were worked on in preparation for school this fall.
The issue of food consumption has come up again. I raised it. My son has been eating less food and getting pickier about what he is having. We have a new ABA assistant director, “AD Martin”, while our regular AD is on maternity leave. His viewpoint was of particular interest to me as it is one I had not heard before.
The problem, as I explained it today, is that my son does not clean the spoon when given a bite of anything. And I do mean anything. He loves ice cream. He does not like to feed it to himself. We let him though because we think it is important that he learn this skill. However, he just gets extremely frustrated and upset and, what should be an enjoyable thing, turns into a cry-fest.
He has trouble (a) holding the spoon; (b) getting the spoon to his mouth; and (c) getting the ice cream from the spoon into his mouth. With a heaping spoonful of ice cream, once it goes in his mouth, instead of the spoon coming back clean, it comes back with ice cream still in the rounded portion of the spoon. He does not use his mouth or tongue to remove the whole of the spoon contents from the spoon.
When he feeds himself, he gets the heaping spoonful so he can get some of it inside his mouth. When he does it, he inevitably spills some. He absolutely freaks out at these spills. He will yell, “Clean!! Clean!!” A couple of days ago, it was worse. His new thing? “Change shirt!” Immediately. For a drop of ice cream.
This conversation became interwoven with a conversation about brushing teeth. We discussed the fact that the little guy had “mastered” allowing me to brush his teeth for a while but now he is closing his mouth all around his teeth when I try to brush them.
There was some mention that – maybe he should be brushing them on his own to which I protested. I don’t know about your kids but my kid only fake brushes his teeth. He puts the brush in there and gives the limpest brushing I’ve ever seen, barely touching his teeth but moving the brush around and eyeballing me out of the corner of his eye.
All this talk led to a question of how my son pushes food around with his tongue. I have no idea how he does this. I was also asked how my son uses his tongue while his teeth are brushed to which I had an equally ignorant response. I don’t know. A short inquiry was made. First, Martin had the little guy try to imitate a series of tongue movements. He was awkward doing these moves at best. Next, Martin gave him a candy stick and told him to lick it. Normally, my son does not lick anything. He chews lollypops. He bites ice cream cones. Licking is not in the repertoire.
I was encouraged to take the little one back to the pediatrician to have his oral-motor skills evaluated. They want to rule out any medical cause for the behavior. This made me a bit nervous. I looked for information online and found the book, Improving Speech and Eating Skills in Children with Autism Spectrum Disorders by Maureen A. Flanagan. In it, one of the first things she says is:
Evaluation of oral-motor skills has often been overlooked in treatment programs for children with autism spectrum disorders (ASD) partly due to a general lack of considering the development of the whole child. Thus, programs have often encouraged verbal imitation without focusing on the child’s ability to process the sensory information and then produce the components of movements needed to produce a sound or syllable.
The book gives this example of child with an oral-motor skill problem:
Susie, age 5 has a diagnosis of autism spectrum disorder. She has a limited diet, preferring crunchy foods, such as pretzels that are quick and easy to chew. Susie rejects slimy foods such as canned peaches, meats, foods with lumps, and most fruits and vegetables. She is a very messy eater and often stuffs her mouth with food. Her parents dread brushing her teeth because of the way she fights them.
Susie will continue to have difficulty imitating words and phrases, expanding the variety of speech sounds, accepting new foods, and tolerating tactile input from others until this aversion to tactile input is addressed, through oral motor treatment.
My son is 5. He has a limited diet. He does eat peaches and applesauce and most fruits. He is a very messy eater and packs food in his cheeks like a chipmunk until his first opportunity to get to a garbage can to spit it out rather than swallow it.
He does eat enough that I have not been worried daily but, once again, I’m feeling rather stupid here. I’ve been concerned about his eating habits. I wrote about it and brought it up with ABA. They started this “new foods” program and then put it on hold. Now, I’m finally being told it may be an actual medical problem.
This is not cool. Why are there so many people who are supposed to be knowledgable in this area that have not had me get this evaluation before now? He has speech and occupational therapists and ABA and his pediatrician. Not a single one of them told me in over a year – until yesterday – that this was a possibility.
I am grateful this is now getting attention. It may not be a medical problem but it should have been part of an initial evaluation post autism diagnosis.
Is it just me or shouldn’t there be a checklist for parents of newly diagnosed autism to go through to get appropriate medical and other treatments for their children? On that checklist should be speech, occupational and behavioral therapy evaluations with lists of providers in our area, potentially ADHD evaluations and, of course, the oral motor skill evaluation.
I’m feeling mixture of gratitude and anger for yet another delay in my son’s development. Is it really always going to be on us as parents to find our own diagnoses and then seek out the treatment? I’ve been reporting the symptoms for a year. Now, I’m finally being directed back to square one – the pediatrician who should have done this evaluation from the beginning! And, of course, when I called to make the appointment, she is on vacation.
I think it’s important that all of you are aware as well. These peculiar eating habits may be more than meets the eye.