Feeding Issues

My son ate a fairly normal diet of baby foods, cereals, formula etc up until we hit the 3rd foods (chunky and soft textures). At this time my son refused to eat these baby foods and I switched over to mashed up "table food" vegetables, etc. A little after a his 1st birthday, he began to self eliminate foods from his diet. First he refused peas, then he refused, lima beans, and over a few months had self eliminated until mashed potatoes and oatmeal were the only mushy foods he would eat. Then it became a fight to get him to eat these foods, to the point that he would gag and throw up when these foods were placed in his mouth. He only wanted crunchy foods, crackers, dry cereal, etc and continues to pretty much eat the same diet today. I have put other foods in front of him and he gags or refuses to eat.

Any other parents experience this type of regression? It didn't really fit into the regression categories mentioned in the ASD study I just completed for my son. Maybe consider including this as a regression category in the survey.

Side note: Before the DAN! doctor, he would drink a gallon of milk a day if I let him, I eliminated milk as a choice for him to have since Nov 07 and noticed improvements in behavior and speech shortly after. I have long believed he was getting the proper nutrition when he began his self elimination diet. it is hard to tell if this is a sensory issue, gut issue or a combination of both.

MarineMom02, that is a fascinating idea: to see if there is any rhyme or reason to these patterns of food acceptance, refusal, or preference. Are they sensory based? GI-issue based (as in, something starts to make a child feel ill and they don't want it anymore)? Are they based on some kind of nutritional craving? Are they simply part of the tendency in autism to get "stuck" in a certain pattern of behavior?

One thing is certain: behaviors of all kinds change over time, sometimes in bewildering ways. Another parent was commenting recently on how a new "stimming" behavior emerged when her child was 9 or so; similarly, my son started a new one at 14. Part of the challenge in coping with autism, I think, is how random and ever changing it can seem.

My son also used to eat a wide varitey of foods at 1 year of age. He liked, oatmeal, mashed potatoes, carrots and etc. and self eliminated these foods over a course of 1 1/2 years. He will no longer eat alot of the foods he once did but I found he will eat Eggo's crunchy style! They have 11 vitamins in them and he also has added strawberry pop-tarts! This came in handy because of Amoxicillin that he would not take medicines at ALL and he was convinced by the pink color it tasted like strawberry pop-tarts. I to have spent many nights worrying about nutrition. My son likes milk but I eliminated it at around 2 years of age because he kept getting ear infections. stopped the milk and hasn't had a ear infection since and he is now 4 1/2. He is "Good" about speech now and I can tell about the behavior being better because 1 mnth ago he wanted choc. milk mixed only with Hershey Syrup (It's a Label thing) and I let him have it because in pre-school all they serve is either juice or milk which he will not drink either of. I was hesistant at first but I thought if he wanted it I would let him have it slowly. He started becoming harder to settle, had meltdown's which he never had before and was generally cranky. His teacher asked if I had done anything different and I said yes, I had been letting him have choc. milk. I stopped the Milk and over 5 weeks got back to himself. It seems Crazy but it is true in my son's case I would not of believed it if I hadn't been charting him. Texture things became more of an issue as he has gotten older. It's as if it comes out of the blue and the next thing you know he trys something similar. It seems to have no rhyme or reason behind the sensory things. Just that you have to be in tune to your childs needs and know they are bothered by it just the same.

My son also started Mother's Day Out just after turning 1 and this was when he first began experiencing ear infections and 8 months later had his first set of tubes after 6 infections treated with increasingly stonger antibiotics. While being treated with antibiotics, he had severe diaper rash and was the worst when he was on augmentin. His diaper rash and diarrea was so severe he bled and I had to let him walk around diaperless because he screamed in pain.

I believed early on that he had a sensitivity to milk products. He developed a skin rash on his cheeks shortly after starting formula, but I was told that his skin rash wasn't related to the milk. My sister and I BOTH had sensitivities to milk based formulas and had to take soy.

I have been able to get him to add other crunchy foods to his diet, usually same shape, same flavor (cheesey), etc.

I know my son has a host of sensory integration problems and he has had sensory issues since about 5 months old.

It is hard to discern how much is sensory related, how much is GI related and how much is "craving" that contributes to his restricted diet.

There is no doubt that the restricted diet is preventing him from getting good nutrition, vitamins and minerals that he needs, so we supplement. I long had concern over proper nutrition, but the DAN doc was the first to provide nutritional supplements that he can take, mostly liquid with no taste.

I'd like to see this listed as a possible regression category on the survey. For me, this was the first sign that something was not right. I suspect that nutritional deficiencies at this vital age can play into a lot of the other delays we see, such as speech, motor function, etc.

MarineMom02, thanks for your input. I hope we can add questions about food and feeding issues. They are so complex, and cross over into GI issues, allergies, and so many of the other areas.

One way we are hoping to efficiently capture a giant snapshot of many issues at once is by constructing a "comorbidity survey." That would permit us to ask, in one survey, about a huge variety of co-existing issues. (We're applying for a grant to fund this now.)

I just wanted to share our new article on Feeding Disorders in ASD: http://www.iancommunity.org/cs/therapies_treatments/treatment_of_feeding_disorders_in_asd

In an interview, Dr. Darbari of the Feeding Disorders Clinic at Kennedy Krieger Institute shares how these disorders are treated.

Please comment! What have your experiences around feeding disorders, or just general feeding issues, been?

My daughter is 9 years old and has feeding issues. I have taken her to countless professionals and had no results. She currently has a very limited diet.
She eats oatmeal with applesauce for breakfast. She will eat a certain type of bagel for a morning snack. She eats half of a sandwich on toasted bread with ham on it for lunch. She eats either pancakes or waffles for an afternoon snack. For dinner, she eats stage 3 baby food of broccoli and spaghetti. She drinks 2-3 cups of milk a day. She will otherwise only drink water. She will eat pizza once a week.
She has multiple food allergies and requires an epi-pen. She will not take any oral medications. When she is sick with a fever, I have to give her suppositories of tylenol. It is very frustrating and nobody seems to be able to help us.

Any help will be appreciated in our local area.
Thanks.

Speaking as a 51 year old who went undiagnosed until a couple of years ago; I drank huge amounts of milk as a child because I couldn't digest most of the solid foods I was fed. Milk was soothing on my stomach, but had some side affects consistent with those mentioned above - chronic sinus, throat, and ear infections, I was hoarse all the time, my face was one big pimple eruption, cranky, incapable of socializing or carrying on a conversation...

A couple of years ago I found out that the foods I was eating triggered most if not all of my ASD symptoms. I'm now on a very strict diet on the days I work; I eat my own chicken and rice recipe with dates (very bland - only the dog will eat it), chicken breast, apple, peaches and/or pears, and occasionally have an egg. On my 2 days off I eat anything I want, but take huge amounts of digestive enzymes I've purchased at GNC with each meal. I found out that I can't fully digest most plant proteins, as well as whey and a few others. The partially digested proteins were triggering all my ASD symptoms. After eliminating them from my diet my wife says I'm a new person - I can actually carry on a conversation, although I don't have full control of my mouth. I tend to blurt out things that I'd prefer to not say. But it's slowly improving.

I can't digest gluten, but can digest oatmeal. However I go through mood swings of varying degrees shortly after I eat it. The mood swings went away when I switched from oatmeal to peaches.

Bottom line; I'd suggest going to a very bland, extremely limited diet heavy on vitamins. If your kids are like me, you can forget getting the nutrition they need from the food. It's going to have to come from another source.

I absolutely can't eat the following; gluten, whey, nuts, peas, blueberries, strawberries, grapes/raisins. You might try a very bland diet like the one I'm on to give the child time to settle, especially avoiding those listed above, and then slowly add in other items while closely watching your child; behavior, moods, ability to socialize, speak, listen and interpret verbal conversations properly, ability to "read" others, general physical health; lethargy, sinus infections, general achiness, etc. All these are signs I've learned to rely on that I'm eating something I shouldn't. A good vitamin/mineral supplement is an absolute requirement.

Your child isn't just being finicky. Many of us boys refused to eat our vegetables because they were slowly poisoning us. I mean that literally. The problem isn't in our head. This is a real physiological problem. Forcing the kid to eat foods (s)he can't eat because you're afraid (s)he isn't getting the proper nutrition will be much more harmful on the kid when you can solve the nutrition problem with a proper vitamin/mineral supplement.

Welcome to bowlingmama, and greetings to Calm.

Bowlingmama, I'm sorry to hear what a difficult time your child is having around food and feeding. As you can see from this forum, this is very common for individuals with ASD. Many are fairly rigid in their routines around food, and very selective. This does not constitute a "feeding disorder" unless it reaches the point where the child is unable to eat age appropriate foods (e.g. a six year old on a liquid diet), or food issues are so disruptive they are interfering with learning, therapies, and family life. In any case, I hope Dr. Darbari's interview will provide some insight into how different aspects of these issues are approached. Also - note that the team does do consults with physicians around the country treating children who are too far away to access Dr. Darbari's clinic.

Calm, thank you for sharing your experience with us. I just wanted to note for our readers that the idea that special diets may help people with ASDs is being researched. The National Institute of Mental Health (NIMH) is currently conducting a clinical trial on the gluten free-casein free (GFCF) diet, for example. See: http://clinicaltrials.gov/ct2/show/NCT00090428

For those interested in learning more about special diets in autism, the ideas behind them, what we know so far, and the experience of families participating in IAN, see: http://www.iancommunity.org/cs/ian_treatment_reports/special_diets

My 12 year old has a different issue he seems to eat everything,His OT says it is partially, due to an oral Fixation issue that he has. He uses chewelry for this issue. He is constantly in the fridge he has eaten some of the nastiest rotten things you can imagine, what else can I do.

Hi KrystalL, and welcome to IAN.

I'm so sorry to hear that your son is having such difficult issues around constant eating. I was wondering if he only eats all kinds of food items, even rotten ones, or if he also eats non-food items.

In any case, if he is engaging in a behavior that interferes with his life and learning, or is potentially physically harmful, you may want to consider seeking extra help. It sounds as though the OT is already trying to address the sensory seeking aspects of the problem, but you may want to consider seeking the assistance of someone expert in behavioral approaches, as well. Such a person would analyze circumstances around the behavior, and work to encourage new behaviors while eliminating the old ones, in collaboration with other professionals like the OT.

You might ask the OT or your pediatrician for a recommendation. You might also call the Autism Speaks' Autism Response Team (888-288-4762) to see if they have any resources in you area to point you to, as far as behavior experts. Another possibility is contacting your local chapter of the Autism Society of America to see if they know of any local professionals who might be able to help: http://www.autism-society.org/site/PageServer?pagename=community_chapters

In any case, I hope the situation improves for you and your son soon.

Hi. I have a 5.5 year old son with ASD that used to be a great eater. Since the first weekend in July he has dwindled his food selections down to yogurt and Pediasure. He refuses all other foods. Can a child regress at such a late age?

Hi tingngabe, and welcome to IAN.

Extreme food selectivity has long been observed in people with autism spectrum disorders. (Have you seen the new HBO movie about Temple Grandin, a well known person with ASD? In the movie, they stress how she would only eat jello and yogurt...)

I fear I am not an expert on feeding issues, but I would think that a first step might be a visit to the pediatrician. Because your child's eating behavior changed, the first question usually is: could there be a physical reason for it? Is a child feeling sick, constipated, etc. and so doesn't want solid foods? If there is any physical cause, you would generally want to treat that before moving on to more behaviorally focused approaches.

If there is no discernible physical cause, or that issue has already been addressed, then a family might explore other issues: sensory sensitivities that have arisen, or patterns of behavior that have become rigid. As you can see from Dr. Darbari's interview, an occupational therapist, a nutritionist, a behavioral expert, and other professionals may be needed depending on what the issues behind the food selectivity are. Even though your child may not have a full blown "feeding disorder," it can be helpful to understand the different aspects of treating "feeding issues" that come into play.

If you haven't had a chance to read Dr. Darbari's interview, you can find it here: http://www.iancommunity.org/cs/therapies_treatments/treatment_of_feeding_disorders_in_asd

If you need help finding local professionals to aid you, ask your pediatrician or other members of your treatment team. You can also try calling the Autism Speaks' Autism Response Team (888-288-4762) to see if they can refer you to any behavioral experts, OTs, etc. in your area. Another possibility is contacting your local chapter of the Autism Society of America to see if they know of any local professionals who might be able to help: http://www.autism-society.org/site/PageServer?pagename=community_chapters

Because children with ASD generally are coping with many challenges, families also go through a process of deciding which battles are worth winning, and which issues are most crucial to address. Is their child growing and developing and healthy despite a restricted diet? They may just do the best they can with the restricted diet. Is the child's diet having a negative impact on sleep, learning, behavior, growth? Then it moves up in the hierarchy of urgent issues that need to be addressed.

In any case, I hope that the situation improves for you soon.