"What's Eating My Child?" - notes from a talk by Kelly Dorfman
The notes that follow are my (Sarabeth's) summary of a talk given by Kelly Dorfman. Any inaccuracies in transcription are undoubtedly my fault, and I apologize for these in advance!
Doctors and therapists who work with kids on the autism spectrum have all sorts of things they want their patients to accomplish, and medications they think might help push the body in one way or another...but they often don't stop to ask whether the goldfish crackers, which the child eats nearly exclusively, have the nutrients that child's brain needs to develop - let alone to heal and catch up and continue developing.
We aren't the government - we can't run at a deficit. Our bodies need everything that they need.
Human brains have important windows of development, and the electrical activity of brain cells actually changes the physical structure of the brain. Sensory-rich environments shape the brain (causing up to 25% more connections)...which is why we're always buying black and white mobiles to hang above babies' cribs, so that they're getting as much stimulation as possible! Children who are rarely touched have 20-30% smaller brains.
Babies' brains contain 100 billion neurons, but the wiring that connects them is undeveloped. The brain eliminates (prunes) connections and cells as it grows. The two main pruning times are in the prenatal period, and adolescence. This is why some of the windows of development seem to close, making it much harder to learn certain skills: the window for acquiring syntax may close at about 6...while the window for adding new words never closes. The window for learning second languages is best until age six, and then declines...which makes it kinda silly, the way we start teaching foreign languages here in the USA in sixth grade!
Our children's brains are built from the foods they eat.
It's very difficult to do studies that test nutrition vs. lack of it. So in general, we have to test the cognitive abilities of other mammals when we want "scientific evidence" for why it's important to eat well. Other mammals have similar brains to ours, and also require high nutrition in order to develop. So we have animal studies like: "adding a multiple vitamin/mineral supplement to adequate diets significantly increased non-verbal intelligence", or "Animal studies found that poor nutrition not only damaged the brain, but caused withdrawal from peers and contact with objects in their environment." A sad study, actually based on human children, was done when a charitable organization built a beautiful new school but found that until students received adequate food, they couldn't learn: "Study in Guatemala indicated that poor nutrition negated benefits of a proper education."
But when you're dealing with a child who has autism-spectrum delays, and who has sensory challenges, and who is an incredibly picky eater, this isn't a situation where you can pour cheese over something and the kid will eat it and suddenly have a good diet. You're dealing with a very challenging situation.
Everyone will have "sensory problems" at some point in their lives if they're under enough stress, when it feels like they're juggling too many things at once. But kids who are dealing with sensory issues are more or less always feeling this way, and their brains never get much of a chance to rest. The label of ADD (now considered a diagnosis on the autism spectrum) doesn't tell you why a child can't pay attention. And many people don't understand that certain things that feel easy to those of us not suffering from ADD or whatever other diagnosis, are impossible for a child on the spectrum. I consider ADD/ADHD to be a symptom - there are other things causing you someone to be able to pay attention.
Right now, I'm choosing to stand here and pay attention to you. But if I wasn't "collating data" well in my brain, I might be forced to notice everything that's happening around me right now: "a person is tapping their foot over there! My collar is itchy! I smell a donut! That door is open, I might be hungry, my foot hurts, my pants are rubbing..." Right now, I am choosing what to pay attention to. But the more overwhelming the data becomes, the more difficult it becomes for me to sort things out.
Autism is your sensory system completely overwhelming you, and often in that case, you come up with ways to distract yourself from the overwhelm, by moving rhythmically or trying to stimulate your system in certain repetitive ways. If you force a child with PDD and ASD to look at you, they often lose track of what they were trying to tell you, because if they have to process visual data in addition to all the other things they're processing, it's just too much to deal with. Or, they might create a wall of sound around themselves so they can better exclude more information, in order to sort through data they've already got. The worse the sensory processing is for a child, the more severe their diagnosis will be.
So - when a person is mis-reading data, what happens is that their stress hormone levels go up. Some kids on the autism spectrum have permanently dilated pupils, or they sweat profusely. They are in flight or flight mode all the time, forming and mis-reading sensory data constantly. It's like being in a noisy circus all the time, and not knowing where to look first.
Interestingly, researchers have found that when stressed, 2/3 of people overeat, and 1/3 under eat. (When under extreme stress, nobody overeats. But two hours later, you'll find yourself overeating again.) Sugar and starch temporarily lower stress (glucocorticoids) hormones. Check out "Why Zebras Don't Have Ulcers" - the basic jist is that they don't get ulcers because they are under severe stress (i.e. chased by a lion) only about once a week. We're constantly under the mild-to-moderate level of stress all day long...
Two-thirds of people in this country also happen to be overweight, which is an interesting correlation.
There's another piece to the sensory challenges experienced by autistic children, in addition to the issues with information processing. Autistic kids often lack basic body awareness, often called "self regulation." Instead of just knowing without thinking that your arms are attached to your shoulders and are right now by your sides, an autistic person may have to think carefully about it, which ends up being a frantic process that goes something like this: "Where are my arms? Where are my arms? Where are my arms?! Other people's arms are over there! Are mine there, too?..." The information about arm-location should simply be available, but to them, it isn't.
In a sensory processing disorder, a child is mis-reading data or collating it improperly, which adds up to all sorts of "behavioral" problems, and it's why autistic kids are often so sensitive to their parents' emotions, and what's going on around them. They tend to need to regulate their bodies using someone else [either wanting to be with others constantly, or not at all]. Imagine: if my brain isn't telling me, Gosh I just bumped into someone, and banged into them with my arms! (which I can't do, if I don't immediately feel where my arms are to begin with), a mis-read of data will happen: a child who bumps and finds that it feels good, or they don't notice the bumping is happening at all. You can tell a person that bumping or swinging their arms wildly isn't okay, but if the nervous system isn't processing, the command won't stick.
You might wonder how this ties into eating...but it does, because eating is the most sensory task we have. There's smell, sight, taste, touch, even hearing involved, not to mention the coordination required to get food into the mouth, and there are huge numbers of sensory inputs with every bite of food.
Kids on the autism spectrum generally have major "behavioral" problems in three areas: eating, toileting (another sensory-rich activity), and sleeping. (You might think sleep isn't a sensory activity, but imagine a brain that isn't regulating very well, and imagine a child who's experiencing data going in constantly, concerning the tiniest details, and who is constantly trying to process it. The child is continually trying to pay attention to what may feel like a never-ending stream of information. You can try saying, "Fall asleep! Pay attention to the sleep signal! Go to sleep now!" But of course, this is really hard to do intellectually. If the child's brain is wanting to pay attention to the legos that it's thinking about, and no neurologically clear signals of tiredness are happening, their brains can spin and spin, and tiredness turns into lots of anxiety at bedtime.)
So you can see why someone who's dealing with a hyper-alert state, constantly overwhelmed, is going to want comfort food. Kids on the spectrum and with SPD (sensory processing disorder) want to eat bagels and pasta because they are particularly vulnerable and feel stressed - they want to calm down their stress hormones.
Long term sensory-overloading can in some ways improve memory and make the senses sharper - about certain things. One of my friends recently spent ten wonderful days relaxing on the beach, in the sunshine...and then had a frantic, frenzied flight home. "How was your trip? How are you?" I asked her. And she answered, "Exhausted, and the flight home was terrible, and they lost my luggage!" The traumatic things are what she remembered most clearly about her gorgeous and relaxing vacation.
Maybe there's some evolutionary reason to remember the negative stuff - but in autism spectrum kids, this response is disproportionate. If you've dealt with a picky eater, you know how she will remember the time, two years ago, when you tried to get her to eat something she didn't want to have. New stuff means new sensory information to collate and deal with. This is extremely stressful, which is why she wants the same thing she had yesterday, that's predictable. Autistic kids are very brand-loyal. When we're dealing with picky eaters, we try to turn new foods into old foods. For them, new is NOT novel and fun. We work on foods over and over and over again until the child finally becomes acclimated, and the sensory system calms down. People with sensory issues do not like novelty.
ASD kids can crave endorphins from gluten and casein, because of the morphine-like effect they have in some people, when the proteins aren't broken down properly and not absorbed. It's never spinach that these kids want - it's always bagels, pasta, dairy, and sugar.
So what about sugar? Does high sugar consumption affect behavior? If it calms the stress hormones temporarily, why not eat it?? Because this is unfortunately not what happens in the real world, and slowly, interesting research is bearing this out: "Reducing sugar consumption in a juvenile dentition center lowered disciplinary actions 47% over a year. Significantly lower levels of antisocial behavior were found when sugar was reduced in over 1,3000 detained juveniles."
If you look at studies on sugar, people will often say, "But on average, they've proven that sugar doesn't cause hyperactivity, or ADD, or whatever!"
The average kid is unaffected, it's true. But if you look more closely at the studies, you find that eating sugar does not change the behavior of most kids (although we don't know what else it might be affecting!)...while it does affect the behavior of a sub-group of people very poorly. And who are the kids in the sub-group? It's the kids who already have sensory issues, or developmental problems, or behavioral issues, or whose livers aren't working so great, or have methylation problems... This study last year, at a juvenile detention center, where kids were locked up (and therefore easy to track), the researcher talked the wardens into getting the sugar out of the kids' diets for a period of time. Over 1500 kids, in various facilities, there was a nearly 50% reduction in disciplinary actions! That's huge!
Often parents know when their kids are members of the Susceptible group. Parents know when their kids are addicted and when their kids behavior is affected.
One of the takeaways is that if you run an institution or a family, cut down on sugar. (At the very least, cut out sugary drinks: half the added sugar Americans consume comes from beverages. Beverages is where all the mark-up is - they make much more money on drinks than anything else. "100% fruit juice" has about the same calories as soda. Average soda consumption is 52 gallons/year.) Sugar can be like heroin - it's very very difficult to get people to drink water once they're hooked on soda.
Even the American Academy of Pediatrics, who don't usually delve too deeply into such things, say that kids should have no more than 4 oz of fruit juice per day - and a juice box is twice that. Go back to good old fashioned water.
Artificial colors are similar to sugar: in the European Union, warning labels are required, which say, "May cause or worsen hyperactive behavior in some children" The sub-group of children who are affected...are, once again, disproportionately male, and on the spectrum. The irony: now you can get Benadryl without a dye (which can cause allergies)!
If you're the type of person who overreacts to medications, due to liver issues/methylation problems (which many of these kids have), you are also going to react to artificial dyes, which require the same liver detoxification pathways to process.
The doctor of the future will be able to test your liver enzymes and predict which medicines will not go well. And this might allow doctors to find medications (and artificial dyes!) that don't make kids cuckoo. But many people, in the case of dyes, will prefer the natural versions anyway.
Most people think of food allergies in a very narrow way: you eat shrimp or peanuts, and your throat closes or you get hives. But a reaction can also make you spacey, or tired, or have trouble concentrating. Food sensitivities and reactions like these are very hard to test for - the traditional reactions where you end up in the hospital or need an epi-pen are obvious, and their prevalence is also increasing hugely. You will know when a child has these.
But there are real reactions that are not caused by histamines, and especially in a child whose nervous system isn't functioning normally, the signs of these reactions tend to be behavioral. It is very hard to test for what you don't know about, so preliminary studies are like this one: "Researchers followed 100 ADHD children (age 4-8). Half were put on elimination diet (could eat rice, meat, vegetables, pears plus potatoes, fruit and wheat) for 2 weeks. If they were not 40% better as reported by parents (on the ADHD rating scale, or 'ARS'), they removed potatoes, fruit and wheat for 3 more weeks. After 5 weeks: parent ARS score improved 53% in diet group, and 3% in control group. Teacher ARS scores improved 42% in diet group and 1% in control group."
This study tells us that something is going on, although we don't know exactly what.
Why are we becoming more reactive? Probably many reasons. There has been a 400% increase in allergies since GMOS were introduced. Peanut allergies began going up dramatically after GMO soy was introduced in 1997 (20% each year since). In the UK, soy allergies increased 50% the year GM soy was added to the food supply. These might not be high reactions, and not only hives - but problems can manifest as behavioral or immune reactions that are smaller. (There is no other way to avoid GMOs aside from buying organic foods.)
The main GM crops are sugar beets (95%), soy (90%), Canola (90%), Cotton (90%), corn (88%), and Hawaiian papaya. So even your refined sugar is probably genetically modified!
A reaction you might never think of as an allergy or a food intolerance, is ear infections. There was a research study done by a doc in Washington DC, who found that 89% of the time, kids with ear infection or fluid in the ear were reacting to a food that, when pulled from the diet, stopped the chronic ear infections. Why do we care about that? You might say, well, ear infections go away anyway. But if they happen repeatedly and often, they affect development. Remember what happens in the first couple of years of life? Auditory processing is happening. You rock your baby, the baby is looking all around, and it doesn't have context and language. Over the next two years, that baby is going to turn all that noise and data into language. "Where did the noise come from? Where does that light come from? What is that sound?..." Right away, the baby learns to hone in on your face, and sort out what's important, and turn toward the slamming door, and by age two, they'll be talking in complete sentences...
But what happens if their ears are full of fluid, or chronic infections, possibly in addition to other health issues? An interesting research study followed kids through elementary school, middle school, and college. Kids who had ear infections when they were young - even though the ear infections were no longer happening by school-age - were more distracted over the entire study period. Ear infections impact children's development all the way through. Ear infections usually go away around 3 or 4 or 5, but the source of the infection doesn't go away, exactly - it just goes somewhere else.
In my practice, we say that one ear infection is okay - we'll just wait and see. If there are two infections, we're on alert. If there is a third ear infection, we take action. Dairy intolerances are most likely to cause ear infections, along with soy, which is why we don't very often substitute soy milk for dairy milk any more - this creates a "dirty trial" that is unlikely to work. Ear infections are an early warning sign of food intolerances and allergies. Children with cow's milk allergy in infancy have significantly more recurrent ear infections later.
How is it that you can react to something but not get hives, or have your throat close up? That's because histamine is only one of many other compounds involved in allergic reactions. And we haven't been able to figure out good tests for many of the other messenger molecules that are at play in an immune reaction - many of which we haven't even discovered yet! "Cytokines" have names like IFN-y, TGF-b, IL-4, and IL10, and they are like Mission Impossible tapes - Tom Cruise hears his mission, and the tape blows up. Just like that, cytokines deliver messages to cells, and then immediately disappear, which is why we don't yet have blood tests to measure cytokine reactions. We do know that cytokines up- and down-regulate inflammation (although mostly up-), they cause or reduce inflammation, and are probably responsible for some food reaction symptoms that are not hives - like irritably and tiredness. And this is why your allergist can't test you for these reactions.
The immune system talks to the nervous system. There was a research study where they found that two-thirds of kids with allergies and autism deteriorated in the spring. The doctor who initiated the study sprayed water up the noses of half the kids, and water mixed with pollen up the noses of the rest of the kids. The ones sensitive to pollen had immediate behavioral effects. BUT - only half the kids who reacted had runny noses along with their behavioral symptoms. The findings were exactly the same in two other similar studies - traditional "seasonal allergy" symptoms don't always present with pollen allergies. Doctors who work with autistic kids find that for kids who chew on their clothes, it's almost always worst in the spring. Probably it's a a cytokine issue that causes the shirt-chewing, but all we see is that they chew dramatically more in springtime. Ritalin gets prescribed a lot more often in spring, and teachers and parents find worse behavior at that time, overall. ("The child who fell apart in the spring" discusses this.)
Gluten and Casein both have a lot of proline amino acids, which can be very hard to break it down. Twenty years ago, there was no research on the gluten-free/casein-free diet (also know as GFCF). Now there is research. The bottom line is...it works! And, it doesn't work! It works for about 1/3 of kids, dramatically, if they start young enough (before 3 or 4). For another 1/3 of kids, it helps with secondary behavioral stuff, but not a huge amount. And 1/3 of kids show no improvement at all. Who might it work for? Mostly, the kids who limit their diet to mostly gluten and/or casein-based foods. Also, kids who have chronic gooey stools, have frequent ear infections, sinus problems and/or asthma, who have lost skills or had gains leveled off, and who are extremely hard to engage.
Peptides are pieces of proteins not completely broken down. The peptide theory notes that: abnormally high levels of peptides related to gluten and casein are found in urine of children with autism. Following children for 2 years on GFCF diet found improvement in those on the diet, and regression in those off the diet.
In 1970, Norman Borlaug got the Nobel Prize for developing a dwarf wheat variety that was credited for ending food shortages in Pakistan and India and tripling Mexico's wheat production. This High Yield Variety is not completely natural, requires more inorganic fertilizers and pesticides, and has a higher protein content. Food processors continue to cross breed to create wheat specifies with more desirable characteristics.
Even the Mayo Clinic (not exactly on the forefront of Crazy-Think) finds that celiac is four times more prevalent now vs. 50 years ago. They also found much higher levels of non-celiac gluten intolerances. We are passing on susceptibilities that would have previously killed us, such as the tendency to have trouble with gluten.
Building Neuro Connections:
The Hebb Model, developed in 1970s, is that "neurons that fire together, wire together." You have an experience, and the neurons begin to wire in different ways, until they begin working together. Association helps to tie new information into existing pathways (established pathways help strengthen weak signals), and this happens all over the brain. Neurons actually have to change their chemistry in order for learning to happen.
In Autism, even with constant repetition, the chemistry of neurons is just not changing. When you want to do something complicated, you have to access different parts of your brain, get the information you need, and sort it. In Autism, people can learn to use scripted answers, or learn to say "I don't know," or they can answer an already-"sorted" question: "Did you have PE today? Do you have shoes on?" They have a hard time with complex, abstract thinking ("motor planning of language"), which requires that you draw information from many parts of the brain at once. Lack of neuro-complexity is associated with learning disabilities and autism.
Techniques found to improve complexity:
Novelty (produces stronger electrochemical impulses so neural growth factor is secreted and helps form a more long-term connection by fostering extra terminal growth).
Strong emotions (Studies find consistently that strong emotions fix memories).
Repetition (speech and occupational therapy) [Life!] Lots of repetition fixes information into long term memory. (This is why many 40-year-olds are better at problem-solving than 20-year-olds.)
What does dyspraxia look like? How can nutrition help?
Dyspraxia can be the dyspraxia of language ("What's that word? Oh, oh, oh..." - but if someone says "cow," you know what it is), or immaturity/impairment of the coordination of movements, possibly also affecting language, organization, perception and thought. It may look like clumsiness, poor pragmatic language (appropriate social language), and abstract thinking.
The best dyspraxia program ever: Eating Good Fats. The brain is a "house of fat" (60-70%).
When introducing a new food or supplement, always watch for irritability. Of course, most kids on the autism spectrum or who are dealing with sensory processing disorders are already irritable. It's not "right" that the foods should cause irritability! But, that's why it's so important to notice these things - they indicate that something is wrong in the body, and therapeutic measures will potentially excite things. So irritability is a sign to proceed cautiously, but it can be a good thing. The worst thing in my practice is when a person has been to ten or fifteen doctors, and tried hundreds of things, and nothing has had ANY effect.
Because of sensory issues and other problems, and developmental delays, a LOT of kids have picky eating problems. Underlying issues can be:
Oral Motor Dysfunction/Problems: trouble progressing to solid foods, drooling, mouth stuffing, easy gagging, taking a long time to eat, does not bite into anything (doesn't eat anything requiring biting), never went through phase of chewing on things (when parents brag about this, it is not a good thing!), cannot blow nose or drink out of straw at three or more years of age. Chewing and eating is a symphony!
Sensory Processing Disorder and Oral Sensitivity: will only eat one type of texture, avoids cold foods, has exaggerated reactions to new food experiences (for all we know, bananas feel like razor blades to them!), is highly sensitive to smells, is Very Brand Loyal, will stop eating food if any small change is made, including the packaging or presentation, cannot stand to have unpreferred foods on same plate or table when eating. There is no way to get through this until the child can overcome the sensory overwhelm and find some measure of "success" by learning to eat the foods. Talk therapy doesn't help - these kids need to DO the activity.
Deficiencies. There is a large connection, for example, between zinc deficiency and appetite: with this, kids display decreased taste and smell acuity, and in severe cases it can cause anorexia. Some parents tell me, "My child is a super-taster!" But I find this isn't usually the case. And in fact, picky eaters often can only taste with cues. I use a taste substance to test this, and it has no smell or color, looks like water, and kids often can't tell the difference between this and regular water. They're hyper sensitive, but their tastes and smells are actually altered. Have you ever gone to a magic show and you're given a "tell"? If you play a game with a child, they always lean their heads to the side that holds the penny... When a parents are mixing a new food in, they often tell me that their children notice this before the food even reaches the table! These kids are able to use tells in a similar way. They're not using taste at this point, when they refuse to eat the new food - they won't even put it in their mouths!
Sometimes a parent will tell me that they can be chopping the onions for dinner, while their kid is already not wanting to eat.
In my practice, I try to close the gap between what the child is willing to eat, and what I need them to eat. Meanwhile, brain development is marching ahead, and so I try to use supplements to close that gap until they are eating a balanced diet.
Kids on the spectrum don't get sick in the same ways that other kids do. They can be very sick, but the only symptom may be their behavior. A number of years ago my friend's mother in a nursing home had a urinary tract infection, and the nurses said: "We knew to check because she was behaving badly!" Isn't that familiar? A mom called me the other day and said her kid was getting so hyper and aggressive. I asked her if he was sick. "No," she kept saying, "he doesn't have any symptoms!" Finally, when the child went to the doctor, it turned out that his eardrums had not only been infected, but had burst!
When you don't feel well, you want to eat what you have already gotten used to. Sometimes, when a child finally starts feeling better, parents realize that their children have such high pain thresholds that they've been in severe pain all along. Many kids who were started on reflux medications at very young ages then go on to have picky eating problems, because the medications haven't resolved the underlying issue.
Helping the Picky Eater: requires that you address oral motor/sensory issues. Start with the assumption you will be successful. Explain expectations in simple terms. Offer 2 choices of how to accomplish your goal. Control your behavior. Give yourself a time out if the child unravels. All feedback is positive. Natural consequences if the child is uncooperative.
Introducing New Foods: Mostly, this is possible. But it's extremely difficult to do. You have to do things like this for loooong periods of time, which is different than what most people think, which is that picky eating can be a phase that's over by lunchtime. Concentrate on one food at a time. Introduce one bite of the same food at every meal for at least 2 weeks. For the first few days, the taste won't even be a part of the equation, because the child will be spitting and gagging and crying and giving you grief, and they can't even begin to taste it.
And they have to get over this if they are going to be able to eat the food in the future. Give the child a choice of two foods to try (too many choices is overwhelming). Usually, the child will say only, "NO". If they cannot or will not choose, choose for them - it's the White House Tour: "We're going, we're going, we're going...we're going anyway!" Often, parents will just stop after one or two "No"s.
We tell kids: "It's probably going to taste terrible, you're probably going to gag, it's going to be really, really hard...but you can do it." If you tell kids that it's going to be easy, but it actually is hard, it doesn't help at ALL. We tell them that it's hard, and they can do it anyway.
We offer choices that are "chained" from foods already in diet. Example: sweet potato fries as a new food for child who eats only French fries, or Freeze dried fruits/vegetables for child who only likes crunchy. Studies have shown that no matter what gets wrapped in McDonalds' wrappers, even broccoli, kids will prefer it more. Every advertiser in the world knows this. A study with adults showed that when testing "chicken with mushrooms" vs. "braised cornish hens with morelle mushrooms in a rich gravy", everyone preferred the latter, even though both samples were from the exact same pot. We work our way to eating normal foods using these chained choices.
Set up consequences using "when:then": Your child is stuck, not bad. We do not punish, and we don't say, "if the child doesn't eat, he doesn't love me." We treat it like work: when you do the work, you get paid. When you eat your broccoli, you get to go out and play. If there is not a consequence or reason, they cannot develop the momentum to move. The key is to stay calm and provide a safe, constant structure. When....(you finish your carrot): Then.....(we can finish our video game). You can't make people do stuff. That's the first thing you learn when you go to psychotherapy. You can't make your spouse take out the garbage, but you can change the locks on your house!
If the child gags, it's "oops, the food fell out!" If they spit it out, it's just, "okay, let's try again." Helping the parents stay calm through this process is really critical for success.
Action point: The key to helping picky eaters is projecting calm assurance. This is why a child is often better-behaved in a doctor's office or a therapist's office, because parents are not feeling alone and exhausted. What are kids with sensory issues doing? They are regulating themselves to other people, because since they can't self-regulate, they are overly-dependent on watching their parents and others to get the cues for what they need to do...