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Feeding Issues with Autism Spectrum Disorders

My son has had feeding issues since he was born. He was a good nurser as an infant but he still had sensory issues that often got in the way. When he switched to solid foods, it wasn’t until he was closer to 9 months and even then food just wasn’t a priority or an instinct for him. Children on the Autism spectrum have loads of sensory issues, my child is not different. When babies are given food, they experiment by playing with their food, touching it, squeezing it, rubbing it in their hair, lick it, spit it out, eat it, and so on. Due to a lot of my son’s sensory issues, he didn’t always like to do those things. He never really got to ‘play with his food’ because of many sensory problems. As we figured out what he would eat, we realized that most of his foods were strongly flavored with spices or cheese. We also noticed his preference for crunchy foods like crackers and later cinnamon waffles. We tried everything to get our son to eat more types of foods. Getting mad. Nope didn’t work, it only scared him. Bribing him. Nope that didn’t help at all; there wasn’t a bribe in the whole world that could get him to eat what we did. Forcing him to eat. That so totally did not work. All of this was very stressful because guess what—most people eat three meals a day. We went through this three times a day, everyday with no progress. (For a full story of Ewan’s progress with food and other issues check out the Our Story section.)
 
Going to family outings, holidays, birthday parties, out to a restaurant, or even eating at home can be an exercise in patience, humility, and sometimes futility. If I had a nickel for every time somebody asked me, ‘isn’t Ewan going to eat with us’ and the meal is something like baked ham, mashed potatoes, and green bean casserole—of course, he wasn’t going to eat any of those things. On these occasions, we couldn’t even get Ewan to sit in the same room as the rest of us. My answer was always ‘no, he’s quite happy with his cinnamon waffle’. 
 
Inevitably, my husband and I would argue about our child’s poor diet after holidays and family gatherings. I was always irritated that he never took a little more time to explain the problem. I probably wanted to explain too much about the problem (nobody really wants to hear why your child can only eat crackers and cinnamon waffles). I never wanted to push the eating struggles at holidays or outings, mostly because I feared the meltdown, since his routine was already off, throwing in taking some bites of casserole didn’t seem fair. 
 
In terms of diet and eating, I now look back and see that his pattern of food choice had been set as soon as he began eating. It wasn’t until I sat down to write this that I noticed his eval team made a note that Ewan “doesn’t eat meat, mainly eats crackers, yogurt, some fruit, cereal, and otherwise tends to throw the food. Drinks milk, juice, water.” When I saw that it really hit home how important it is to establish a program of teaching what food is and appropriate eating behaviors at a younger age.  
 
I originally intended this section to hit an audience of parents with children close to Ewan’s age at the time I began writing this, around age 3 or 4. I thought that this would be the most appropriate for parents, who are dealing with the BIG THREE, and for children who developmentally might not be ready for the sensory challenges involved in eating. However, the more I though about it, the more I realized that doing all the mealtime prep work does need to be done with very young children. Most NT children will do all this on their own as infants being exposed to food. But trying getting an infant who displays autistic characteristics early, to play with their food, to get their hands and mouths dirty, to be able to chew efficiently and have good oral motor skills, to be able to sit through a meal, and to be flexible in their food choices, and you’ve really got a lot on your plate. 
 
At some point, my husband and I realized there was a huge problem that wasn’t going away, sort of like the pink elephant sitting in the corner of the room. When Ewan was about 2 ½ we had had enough of the cinnamon waffles and cracker diet that our son placed himself on. We turned to our speech therapist for help and she pointed us in the direction of a feeding team out of St. John’s Hospital / SIU School of Medicine in Springfield, Illinois. After meeting the team and going through Ewan’s limited diet, the team concluded that Ewan’s extremely restrictive food repertoire was enough to warrant treatment. It was determined that Ewan’s core diet was comprised of approximately 10 foods, almost all of which were crispy, crunchy or chewy, and sweet, salty, and well flavored. They also determined that Ewan’s appetite was variable and hard to interpret. He didn’t really know when he was hungry. Some of the interventions that they suggested included rating his food, talking about food, feeling food with the hands, and to model taking a bite—all without stress or forcing him into it. At the time, it just didn’t sink into my brain what all this meant or if it would even work (undoubtedly because my unconscious brain was saying—this is going to be a huge ordeal and take oodles and oodles of your time!). It wasn’t until Ewan had a ‘light bulb’ moment that we realized what treating this kind of feeding problem would entail.
 
If you’re reading this you may be thinking your child has similar issues. Maybe you’ve been working on the BIG THREE long enough and feel comfortable starting on feeding issues. Maybe the supermarket just stopped selling your child’s only staple food and now your child hasn’t eating anything in three days. Maybe you’re just so frustrated with all the dinnertime rituals, fights, or selectivity that you are missing generous portions of your hair. Whatever the reason, now that you’ve come to this critical realization point, you are ready to start dealing with this part of autism. Just remember and repeat this phrase as you think about your child, “be flexible, be creative, and always look for those teachable moments”.
 
Integrating Therapy, Life, and Eating
Now some of you parents are probably thinking, my child can’t sit still long enough to even be at the dinner table to eat, doesn’t have enough speech to even tell me what he wants to eat, or maybe even has a hard time holding a spoon—how in the heck am I going to squeeze in a teachable moment or work of feeding goals in that chaos? Well, this is where everyone needs to step back and say, ok, what are the goals here. This is a child that first, has a goal to learn to sit down for a little bit. I’m not talking thirty minutes here but starting off with a few seconds at a time. This is going to involve sensory time and the use of sensory equipment like swings, pressure or weighted vests, vibrating toys, or something to sit on that provides some kind of feedback like a bouncing ball or disc to sit on. 
 
Your definition of the family table and everyone sitting down to eat is definitely going to have to change. Your child’s chair may be a ball, his table might end up being the end table or the coffee table, and he or she may leave and come back to the table repeatedly. Or you can do what we have done and that’s change from eating at the dining room table to eating on the floor in a Japanese-style dining situation. It may not be a part of my cultural heritage but guess what—it’s functional, my child CAN sit on a big pillow on his knees and eat and he LIKES it.

 
All of the above are issues that can be worked on in therapy and can be worked on everyday at home or school if need be. I firmly believe that many children on the spectrum are absorbing their environment, what you are saying, and the way that you say it much more than what everybody gives them credit for. Granted, these children have a lot of sensory channels that are working on overdrive (or possibly under) 24/7 so some of the messages are garbled or confusing and / or have little or no speech skills. If we can combine the sensory equipment, the speech goals, and the behavioral / social aspects all into one, then the better off everybody is. 
 
This just reinforces my belief that if we start with one area like the sensory aspects of food and apply that in a therapeutic way, the more connections a child is going to make about food, eating, and yes, even vocabulary. We have all different types of sensory issues out there. We have the auditory sensitive child, the vestibular sensitive child, the proprioceptive sensitive child, the sensation-seeking child, the texture defensive child, and so on and so on. 
 
Think of all the times your OT has come to play with shaving cream which is fun enough, but the OT can kill two birds with one stone by doing sensory tactile play with food products combined with the fragrance of the food. What a great way to show your child that food is fun and that food changes, it doesn’t always look or feel like it does when you first see that food. The best part is that this kind of play allows the child to lick their fingers. I don’t see many of us allowing our kids to lick their fingers after playing with shaving cream.
 
What about the child sensitive to sounds and constantly covers his or her ear to a sound half a mile down the road? This one is actually kind of fun to practice with in terms or food. I’ve been able to use my son’s augmentative communication device to work on this goal and other parents can do the same without buying the expensive communication device. Everyone else can do the same thing with a talking photo album. I used digital photos with his device and created pages that included core vocabulary and sound effects. 
 
In terms of learning about food and eating, I have made pages that show a picture of someone eating a particular food. The page has all the vocabulary to describe the situation like the name of the food, if the person is a boy or a girl, whatever I want to include about the scene, and what sound the food makes when someone bites into it. Some foods make a squishing sound like a tomato, some make a crunchy sound, some are crisp, and unfortunately some don’t make any sound at all. 
 
In the absence of a sound for the food itself, I might then focus on the sound of the environment. If it’s a pizzeria, the sound of the ovens opening and closing or the swish of the pizza being put in the oven, or even the sound of the pizza being cut into pieces. This is also a good thing to work on for dinners like Thanksgiving because we can record the sound of everyone talking at the table, the clinking of the silverware, and the slurping of drinks. All of these sounds and experiences have to be included into our little ‘lessons’ because it is most likely something a child on the spectrum is trying to filter out and is being overwhelmed by.
 
The BIG THREE     
If you are going to start by talking about seeds, you don’t just have to show the child a packet of seeds and say well, that’s where some food comes from and drop the subject. This is a topic that is easily expandable to cover a lot of the BIG THREE problems plus get in your food education. 
 
The BIG THREE can be integrated and connected to every part of life. Speech is not taught only in the nice and quiet therapy room or classroom. Behavior is taught in a variety of settings not just during ABA sessions. Sensory integration is not only done in the clinic with the OT. Because children on the spectrum usually have a lot of different therapies or treatments they are involved in, we have to take what we learn in these sessions or from the professionals and apply it to every aspect of life. Having functional goals for your child, especially for the very young child, is essential. Any good therapist is going to be share and explain your child’s goals with you and help you find ways outside of the therapy room to accomplish them. 
 
So getting back to our seeds, we know that seeds grow into plants; plants grow tall, are green and like the sun, water and dirt. Animals and people like to eat plants and fruits and vegetables. Playing in the dirt, putting in some water and making mud, and planting seeds in the dirt and watering them can accomplish sensory play. Speech wise, you can cover good vocabulary terms like root, stem, flower, fruit, tree, etc… and get those good descriptive terms like tall, short, green, round, pointy, etc…Behavior wise, teaching children to go slowly, carefully, and to respect plants and animals is also an option (I will admit tying behaviors into some subjects takes some real creativity). 
 
How many things you can cover and directions you can go in are limited only by your imagination and creativity. Integrate what you do at home with what is going on in therapy. IF speech is talking about seeds and plants, make sure you’re talking about it at home too. 
 
People laugh when I say this sometimes but honestly I have done these things with my son and he remembers all the things we talk about. My son, and I think a lot of children on the spectrum, are pretty concrete and literal. He likes the ‘facts’ so to speak; he likes to know all the nitty gritty details about anything from how a plant grows to what makes a tractor go. Lots of my days are spent where I’m pretty much playing Seven Degrees to Kevin Bacon only it’s Seven Degrees to Whatever Topic I’m trying to teach Ewan. 
 
Learning about food isn’t just sitting down talking about the food pyramid to a two year old and it can be fully integrated into speech, sensory, and behavioral goals. For my son, he not only needs to know what the food is that is sitting so inconspicuously on his plate, but where it came, how did it get here, what is it going to feel like, what is it going to taste like, and give me a good reason to eat this.
 
The Young Scientist
Children are young scientists and we need to tackle many of these issues by letting them be scientists. What do scientists do? They count, compare, classify, measure, and observe. This is the job of any young child as they explore their world, from the smallest infant to biggest braniac at Harvard. We can take each one of these concepts and break it down as we find those ‘teachable moments’ with our kiddos. I will repeat myself here because it is that important—many of the things that are instinctual for typically developing children have to be taught to children on the spectrum. 
 
Counting—well that’s pretty easy. I can count bites, pieces, how many black flecks are on that piece of chicken that I don’t want to eat, you name it. 
 
Classify—this is really important for a child on the spectrum. I guarantee you that these kids are already classifying their food items into two categories—things I will eat and things I absolutely, no way, not gonna happen, I’m never going to eat this thing. Our job as their parents and educators is to classify foods into something more functional and maybe at the same time, take some of the ‘mystery’ out of that long, green, squishy thing on the plate that is otherwise known as asparagus. Classifying foods can mean talking about things that grow from seeds and those that don’t or foods that people eat and animals eat too. Classifying foods can be fun. I’m not asking our parents out there to know the scientific name for asparagus and what family and genus it comes from (unless your kiddo is really into that!) but to find a way to connect it to the way your child thinks. 
 
Measure—this one is pretty self-explanatory but measuring food doesn’t always have to be in a sterile measuring cup or spoon. We can add a ‘pinch of salt’, use an eye-dropper, a turkey baster, and for those kids that like to watch water fall, we can put things in one container and drop or pour them into another one over and over. We can cut slices big and small, make chunks of cheese or anything else, we can make triangles and other shapes, and again demonstrates many different descriptive terms through this. 
 
Observe—this one can be exciting, fun, and packed full of learning experiences for kids, even the little ones. Watching plants grow, seeing a farm or factory, experimenting with food, watching dinner being made, seeing what happens to food when it is cut, squished, blended, cooked, and frozen is just plain cool. Observing food in all its forms can include field trips to farms, museums, historical sites (the kind where they churn the butter by hand!) to going to the factory where some types of foods are made. Those folks who live in Hershey, Pennsylvania are sooo lucky to be able to visit the chocolate factories! Food is something that changes all the time, each item can change as it grows (take grapes and raisins or plums and prunes) and they can change in terms of texture, substance, and color as it is prepared and cooked.
 
Prediction
Once a child is explicitly taught all the above concepts of counting, classifying, measuring, and observing the next leap is for that child to be able to make predictions. This one is pretty hard for a child on the spectrum. But if we take enough time to repeat these processes and cover enough possible scenarios, this same kiddo will hopefully begin to predict what is going to happen with food on the plate and in their mouth. Predicting outcomes for children on the spectrum is most difficult when it involves people and making assumptions about human behavior. Little Johnny can’t figure out why Sally doesn’t want to invite him to her party because he loves to talk to her about dinosaurs. Johnny can’t see that Sally isn’t interested in dinosaurs or lost interest 20 minutes ago into his diatribe about the eating habits of the plesiosaur. However, we are talking about things here and a fairly finite amount of possible scenarios, which tends to come a little easier than predicting human behavior. 
 
Prediction is extremely important when it comes to children, food, and eating. Most typically developing children can predict with a reasonable amount of certainty what a carrot is going to look like, taste like, or smell like each and every time they come in contact with a carrot. Not so with a child on the spectrum and a feeding disorder. The child on the spectrum may not have that kind of instinct and instead must be taught what to predict will happen. Talking about seeds and what a seed can grow into, such as a carrot, that a carrot is orange and crunchy, and can be bitter sometimes and sweet at other times (this can even happen within the same carrot!), makes sense to these kinds of children. Eventually with enough reinforcement, using visual aids or communication devices, with enough practice, the child can predict what’s going to happen when he or she takes that bite of a carrot. Now, the interesting part is when you go through all of the above and have talked seeds and carrots to death, you come to find out that your child really does hate carrots—it wasn’t just the feeding disorder!
                       
The idea of prediction has to be applied in different ways. It’s not just the crunchy items we are talking about here. This means we have to teach the concepts of crunchy, hard, soft, squishy, mushy, juicy, wet, dry, and so on and so forth. Your child needs to know that the mountain of white squishy substance (which is what your kid sees) is not toxic, is a food, can be good for you, and is what happens to potatoes when mashed and beaten up! We’ve then just covered all the things a good scientist does and applied that to what our children can learn about food.
 
Now that you have some basic knowledge about what can go wrong with eating and your child on the Autism spectrum you can begin doing some activities with your child everyday. Remember, these activities needn’t be very long or expensive. The activities that you do with your child should always be FUN and never FORCED. Check out our Food Fun section for some great ideas.