Eating Quirks – More than Meets the Eye.

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.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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10 Responses to Eating Quirks – More than Meets the Eye.

  1. autismangel says:

    Karen,
    It is great that you are getting this information out there. I completely agree with you. My son is going thru this now, the medical testing, very picky eater, wants clean shirts when drop of food or even a drop of water, he eats in the front of his mouth only, he runs to the toilet to spit food out, gags etc. Same with the teeth brushing. He has been losing weight and although I knew his sensory issues were oral, tactile and vestibular – after medical testing found he has reflux and now possible EoE or another stomach/throat disorder. He is being scoped in Beginning of Aug. I do think you are on the right track and as mom’s of children with Autism/ASD kids, its so frustrating to have to always be putting the ‘fires’ out day to day that its so hard to have to do the jobs of others as well. good luck

  2. We have had oral motor evaluations from both the speech and OT and in all cases, Little Miss has been deemed “normal” But she *does* have the exact same behaviors as T when it comes to using/eating from a spoon and tooth brushing. Like you said, even with ice cream, the spoon comes back nearly full. And when it spills on the table? We get the infamous “napin? napin?!” (napkin, napkin?)

    What I would say, having been in the whole feeding issues camp since day 1 (it’s how we knew LM had sensory processing disorder), is that it’s more than likely behavioral. You should — by all means — get a medical evaluation and make sure T is OK, but I wouldn’t stress out about it just yet.

    We’ve been through tons of therapy for the whole oral sensitivity thing and have a list of things that have worked and didn’t work for LM, so if there is anything I can do to help with your questions, please let me know. Of course, you know where to find me!

  3. C... says:

    My son as you know from reading my blog, has a severely limited diet and he is 10. He is like me though in a lot of ways. I hate lumpy slimy food. I have some taste and texture aversions with food but I am not diagnosed with any autism spectrum disorder. However, to your comment about oral motor skills, my son does have the same problem with clamping down on his toothbrush when I help him and he also brushes too softly to clean his teeth properly. My son does also like crunchy food like tostitos, cheez-its, but he will eat hot dogs sliced up without the bun and just light dabs of ketchup.

  4. Melissa says:

    My daughter also has a very limited diet. Feeding issues have been noted with her since before she was 1. A lot of the same things you note, we see too. When she was first evaluated for EI, they evaluated for oral motor issues. This year,we wound up using one of her speech sessions for feeding. (In her regular speech sessions, they do some oral motor work) And for a while, ABA was carrying that over as well. It waxes and wanes. There are weeks when it’s breakfast for dinner …. Hang in there.

  5. Flannery says:

    Thanks for the info. I am also very disgusted at how we all get the runaround with our spectrum kids. How can there by 1 in 110 children being diagnosed, but still so many of the service providers and doctors don’t know their ass from their elbow?

    My kid has always been a picky eater, and fills his cheeks up and stuffs his mouth. We’ve made some progress this last year, but he is still picky. I’m going to have to get this book. Thanks for sharing this.

  6. As always, I can relate to so much of this. The picky eating, the difficulty using a spoon, and, most of all, having to find everything out for ourselves. It seems impossible to find a person (doctor, case manager, or anyone) who will look at the whole picture. There’s one person for school, one for speech, one for OT, one for the meds, but not only do they not talk to each other, they often seem completely ignorant and/or uninterested in what’s going on with the other areas. I would LOVE to have a copy of that checklist with names, phone numbers, and what to do next. Unfortunately, we’re left to stumble around for years at a time while we figure it out ourselves. It gets old, doesn’t it?

  7. Amanda says:

    It sounds like he might also not be comfortable with the sensation of the spoon in his mouth. (sensory issue) Does he feel the same about plastic spoons?

    When I was a kid my mother would give me a spoonful of vanilla spread with a glass of water. It couldn’t get chewed, only licked, and it stuck on the spoon really well (hence the glass of water to dip in and soften it up a little). I wonder if they have something similar where you live.

    My brother was a lot like Susie, in fact he still has a very limited diet at 31 but his speech worked out fine and he got married to a wonderful lady, who was willing to learn exactly what he eats and how. So there is hope!

    My son on the other hand doesn’t have many eating difficulties but still has some speech issues.

  8. jnette says:

    Wow… we can sure relate. Sounds just like Gavin ! Same issues. Will have to see what ST/OT might do to address this next year. It’s not just all about “speech”, is it! ? 😦

  9. eof737 says:

    I agree with you that the checklist should be in place… but often, it takes parents as advocates to get this going… You are being proactive and that is a plus. Hope all continues to go well… never easy.

  10. Pingback: Open Wide… | Solodialogue

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