To me, the one of the most heart breaking symptoms of ASD
So many people with any Autism Spectrum Disorder have some kind of Sensory problem. Frequently, they are diagnosed with Sensory Integration Dysfunction. One of the worst aspects of Sensory problems comes in the form of Oral aversion.
If you don't know much about it, it may not seem so bad just from the name.
On this lens I will help you understand more about oral aversion, risks and therapies and techniques to help alleviate the symptoms - usually it does not go away, but it is possible to reduce the severity enough that the child will eat.
As always... I am not a doctor. The information on this page is not intended to diagnose, treat, or cure any illness or condition. This information is intended only to act as reassurance that you are not alone in this situation, to offer hope and general information regarding seeking professional help and supplemental activities. Supplemental activities are intended as just that and should be used in addition to a regular therapy routine- not in place of it. If you can not get your child to eat.... YOU NEED to seek professional help in PERSON- not online.
What is oral aversion? - I have heard some experts compare the trauma of feeding time to that of rape.
Sounds extreme to make that comparison doesn't it? If a tactile sensation is unpleasant in any area of your body, then you do not want people to do it to you. If you had a hypersensitivity so extreme that it caused pain you would avoid the activity. Imagine if you had a heightened sensitivity in your mouth, tongue and even esophagus. Many kids with ASD also have a greater sense of smell which enhances flavor. Some of the verbal children with this challenge describe the feeling of the muscles in the throat squeezing food down. Think of the feeling of the nastiest texture of food (or other substance) as you chew it, feeling everything and tasting it more intensely. From sucking and chewing on garden slugs to trying to eat kiwis and pineapples with the skin still on, every hair, burr and drip of slime being forced down from your mouth to your stomach by muscles that you only have partial control over.
Now imagine the concerned parents, panicked that it has been 3 days now since Darling has allowed any food into his or her mouth. They become more demanding that this horrific experience must happen. The child becomes more upset and the experience is worse than the time before.
Every parent with a child who has an oral aversion has been at that point... you just want to hold them down and force the food in- you WANT for them to live! Sometimes there is no choice but to force it on them. Do not feel bad if you have had to do it. Sometimes, a feeding tube is necessary. Begging and pleading rarely work. There are therapists who can help reduce the severity so that it will be a bit easier and less traumatic!
What are the risks of Oral Aversion if left untreated? - They can be very serious
The first group of complications is obvious, mal-nutrtition/ starvation/ dehydration. Mal-nutrition can lead to serious complications such as stunting growth (which can mean organs as well as height) neurological problems, cardiac arrhythmias caused by electrolyte imbalances, decreased brain function/ brain damage (iron and other vital nutrients affect brain development) weakness, skin problems, decreased immune system function and a host of other complications including in severe cases, death.
Dental problems: If a child can not tolerate food, they will not likely tolerate a dentist or perform adequate oral hygiene. They can be sedated, but a lot of parents are so afraid to do this that they simply forgo the dentist. This can lead to dental infections which could potentially become systemic- which is life threatening. Studies have also shown that plaque build up in the mouth is directly linked to plaque build up in the arteries, this could set them up for heart disease at an early age.
They may refuse mouth guards for sports.
They may refuse vital medications, and they may not tolerate an oxygen mask around their mouth in an emergency.
They may try too hard to stifle vomit when ill and aspirate.
They may avoid kissing- even parents.
Occupational Therapists, Speech Pathologists, ABA Therapists and even feeding teams with psychologists are available! - They deal with Oral Aversions regularly
Speech pathologists can help by watching how the child is moving their mouth and doing certain oral exercises with the child. The exercises help in two ways. They teach the child how to move their mouths correctly and also they start to be a little bit more relaxed about opening their mouth while seated directly in front of an adult! Once the Speech Pathologist explains the exact challenges that he or she notices, you can discuss how to proceed- some kids eat too far toward the back and choke, some try to chew with their tongues etc.. there are a lot of other things that could be occurring especially if they are not practicing eating regularly. They can teach you how to practice exercises with a chewy tube correctly as well.
Occupational Therapists (specifically those who focus on Sensory Integration Dysfunction) are a valuable asset. They can gradually introduce different textures into your child's mouth. Over time and with a lot of practice, the child can begin to tolerate certain foods. They may use oral swabs and rubber toothbrushes. Pop rocks are a favorite! Usually they try to make it a fun game for your child so don't be surprised if you see the OT sitting there with a toy hanging from her mouth as well!
ABA therapists are extremely helpful in this instance- especially if the child has violent tantrums or is nearly impossible to force feed! They will help to manage your child's behavior to a point that enough food is eaten to survive. Once they begin to accept this, they may desensitize a little bit on their own by eating a little something regularly. This is one instance in which I recommend ABA- it is a health issue and must be corrected quickly, effectively and permanently. The work that an ABA therapist does to get the child to begin eating may itself not be permanent (it depends upon how good they are and how long you keep up the therapy), but the results of eating regularly may become permanent if they do help desensitize the child's mouth.
Feeding teams usually consist of all of the above plus a dietician. If you can get your child's doctor to locate a team for you, I strongly recommend doing so. The extra benefits here are that a dietician can work out specific aversions more easily- textures, tastes and temperatures etc and can calculate what nutrients and the amounts that the child needs for supplements while you work on the aversion itself- being low on certain nutrients can worsen the symptoms of Sensory problems. Also there is a psychologist who can help determine and reduce how traumatic feeding time is for your child.
What can you do if you are wait listed? - There are a few things you can try....
Offer one bite of food (whatever they seem to be least opposed to) in exchange for something they really really want. A few hours later, two bites for something they really really want. And so on.
Offer things that they can put in their mouths- even if they are "too old for that". Be mind full of choking hazards- older children should not try pacifier as they may bite though and choke. Things such as a teddy bear's arm dangling, a safety lollipop, a baby food strainer with candy inside, chewy tubes (introduction to them- do not try the exercises unless they have been demonstrated to you).
If they are the same way with drinks, play a little game of "this is mine" while you drink a ginger ale or other yummy treat (which you have already added a smidge of water to). Eventually, they may want what you have and of course you let them win!
Ask a friend or neighbor to give it a try- sometimes kids on the spectrum listen better to outsiders in a situation like this. Do not feel bad if they eat for someone else but not for you- it happens A LOT! If it works, see if that person might be willing to come by regularly until you get the therapists!
The nutritional value is important- but if they eat nothing, they get NO nutrients. If you have to go to Mc Donald's a lot, then do it.... (I am of course referring to those ON a wait list, with REAL help coming- this is for short term survival only) Supplement with a well known multivitamin at the recommended dose until given instructions by a dietician or doctor. Do not get creative with the supplements without medical guidance!
If your child is lethargic, pale or acting different....
or does not urinate enough....
GO to the Emergency room, Children get into trouble fast. Even faster if they have these problems as they tend to have few reserves.
Therapy will probably not cure the problem - Cutie's therapists worked wonders, but we still spend 90 minutes per night pleading for him to eat.
We have no more kicking and screaming about food! There are no mashed potatoes stuck to the wall! The dog only gets one of Cutie's meals per week!
Cutie now eats approximately one full meal per day. He picks at breakfast a bit, he will have one or two bites of lunch, dinner takes at least 90 minutes but he usually eats about 1/2 of it! He snacks at school and usually had a little chocolate when he gets home! He will eat an entire happy meal!
He had a severe oral aversion, it was so hard to see a child who so desperately needed to eat refuse to the point of unconsciousness. He has needed IV's (fluid resussitation) after refusing liquids for extended periods of time on several occasions and he is quite open about his preference of IVs to drinking water. I used to have to force fluids into him via oral syringe, 5 mL every 30 minutes. We used all of the methods outlined above and for him, it took 3 months to see improvement and over a year to get him eating as much as he does now. He is healthier and happier and I cry to think of how desperate and scared I felt during feedings. He still needs a little bit of Duocal snuck into drinks to keep his weight up- as of yesterday morning he was 45.6 lbs (at 51 inches tall) and 7 years old. His target weight is 51 lbs so he is getting there!
Other kids after therapy! - Some of the other kids we know on the spectrum have had different results-
One of the kids now eats every meal, but only alone in his bedroom, he is gaining weight appropriately and is healthy. A camera was used for a while to be sure he was actually eating.
Another child will eat one or two bites (18 months of therapy) and smears the rest on his face and clothing, often smears the underside of the table as well.
The twins: They eat regularly in large quantities- however, they will ONLY eat dry carbs and drink ONLY capri sun. They had about 9 months of therapy which is ongoing.
One child we know had severe difficulty manipulating foods in her mouth- she is now on a feeding tube to prevent choking. Oral therapy continues in the hopes that one day she might learn to swallow correctly.