Medpedia

Judy Converse, MPH, RD, LD has been a registered dietitian for over 20 years. She has a master’s degree in public health nutrition from the University of Hawaii, a bachelor’s degree in food science and human nutrition from the University of Vermont, has undergone biomedical treatment trainings since 1999, and is well versed in Defeat Autism Now (DAN!) treatment protocols.

Prior to setting up her practice, she worked as a research technician, nutrition educator, grant writer, and outpatient dietitian. She has authored three books as well as the first web-interface accredited learning module for health care providers on nutrition and autism (see her CV for more details).

Judy wrote a guest post a few months back on the medicinal effects of proper nutrition on ADHD and dyslexia. This time around, I wanted to get her perspective on how traditional medical models deal with autism, and why such treatments are ineffective. Our interview follows:

1) When you look at traditional, mainstream treatments of autism and other cognitive disabilities, what stands out to you as the missing piece, or pieces?

The best quote I heard on this came from a gastroenterologist named Arthur Krigsman. He said:

“What can physicians do for these children? We have to look at them and forget they have autism. Do the workup as you would for any other child.”

That simple curiosity is the main thing that is missing. Mainstream doctors tend to look at the autism label, not the child as a whole. If a child walks in with an autism diagnosis or another developmental “label”, they use that to explain whatever it is the child presents with. They automatically jump to psychotropic medications, and forget to look for underlying causes.

For example, if a child without autism presented with head banging or self injurious behavior, a doctor would wonder why, and look for a cause. But when a child with autism has this behavior, the go-to explanation is: “it’s the autism.” In truth, children with autism who present this way are often in pain. They have limited means to communicate what they are experiencing. They bang their heads out of frustration or as a means to distract themselves from the pain of untreated GI disease. I have witnessed this in practice – one teen I worked with broke a helmet doing this, that’s how severe his pain was.

Another example is hand flapping. A person with autism may do this when overwhelmed or overstimulated, as a means to disperse anxiety or tension. Give them nutritional replenishment that helps provide calmer neurochemistry, and you can diminish it without unwanted side effects of drugs.

2) Is it fair to say that the traditional medical establishment model roadblocks nutritional treatments of autism and other cognitive disabilities to a certain extent?

It’s long been lamented that physicians don’t study nutrition.  Most medical schools don’t teach their students any nutrition, not even as an elective. So, the vast majority of pediatricians aren’t trained to notice or treat anything but the most egregious nutrition deficits.

Data on the nutrition pieces of the autism puzzle are growing, but are nuanced and complex. It requires curiosity and patience to understand and apply this in practice. In our current health care system, physicians often have neither of these. They can’t be curious about nutrition components because they don’t have the training for it, and they don’t get paid by health insurers to apply it in practice. They don’t have the patience it requires to absorb all this information, or the luxury of time to take it all in. They are incredibly squeezed for time, and very much under the thumb of the pharmaceutical industry, which has virtually unlimited resources to keep physicians focused on their products.

So, we have a real dilemma – hundreds of thousands of families yearning for information that their physicians can’t provide. If there is a nutritional component to autism or developmental disabilities, the last person who would be informed on this is probably your pediatrician, psychiatrist, or neurologist – and these are the main gatekeepers for services when a family gets an autism diagnosis.

Tragically, what usually happens next is physicians give parents misinformation about the nutrition piece, offer no guidance at all so parents fumble through it alone, or simply discourage them from exploring it altogether.

3) So, with all that in mind, what should parents of children with autism and other cognitive disabilities look for in a care team?

Look for people who listen to you, who respect you as a parent, and who spend time getting to know your child. All children are different, all are individuals, despite sharing a diagnostic label. There is no one size fits all strategy, no dogma – and that goes for the nutrition piece too. There are several diet protocols out there in use for these kids, but not a single one that is best for everyone.

Work with people who are flexible in their treatment strategies. I tell parents: “you are the boss of this team. You can fire anyone anytime.” This is a very important journey. It’s important to trust your instincts, and work with professionals who you trust.

4) Along those same lines, what are some red flags that should make parents consider looking for a different practitioner?

It’s a red flag when a physician wants to place a child on multiple supplements – like 15, 20, 60 pills/day – and they expect a parent to buy them all from their own office. While supplements have a place just as medications might, children need food more than pills of any sort. There is an important balance to strike.

It’s also questionable when a physician insists on multiple costly up front lab tests. Some doctors working with nutrition components for autism rely heavily on these, but labs only describe part of the nutrition puzzle for any child. I devote a whole section to this topic in my book (Special Needs Kids Eat Right: Strategies To Help Kids On The Autism Spectrum Focus, Learn, and Thrive) to help parents navigate this with a good provider and make the most cost effective, clinically relevant choices for lab tests.

Lastly, it’s always a flag if a provider isn’t respectful, or if a provider has not helped your child improve in the expected time frame.

5) What would you say is the biggest improvement doctors can make to the way they work with these children?

It comes back to that curiosity factor. For decades, physicians have assumed that autism, developmental and cognitive disabilities, or psychiatric disorders are brain disorders and nothing else, with no whole body component. But, more and more evidence describes treatable shifts in nutritional biochemistry in the brain, liver, GI tract, mitochondria, and immune systems for persons affected by these conditions.

We already know that children with special needs are at elevated risk for nutrition problems, and we also already know that nutrition is critical for learning, growth, and brain development in any kid. It’s not rocket science to put these two tenets together, and screen all children with a developmental diagnosis for nutrition problems. This should be standard of care.

It’s easy, not necessarily expensive, and there are decades of evidence to support how to help these kids, if nutrition deficits are found. We can leverage this to lift these kids to their functional potential – but we have to be curious enough to look, and audacious enough to expect that these kids can get better.

Many thanks to Judy Converse for her time.