Hard to believe it has been eighteen years since I began my work in pediatric nutrition, starting with the surprise landing of my own beautiful, red head, now-grown-and-handsome-launching-for-college son (surprise because I never thought the red hair in my family would carry through, and because he has always been a surprisingly intense guy).
If you don’t know what dropped me into this niche, read my bio here. Long short, it happened to my family. In 1996, I was on my own as a new mom, scratching my head (clawing at it? until it bled?) trying to figure out what had happened to my amazing baby boy and how to fix it. For all the gory details, epiphanies, and crazy that we went through with doctors, schools, and mean people, read my first book here. I had to write it down – because I knew that I could not possibly be the only mother witnessing such struggle in her baby while all our doctors told us it was normal. How many other babies were going through this “normal” that was not normal? How many would suffer life-long disability because of it? Would my son be one of them? Those were my questions. My son was eighteen months old before a now-renown gastroenterologist named Tim Buie told me that indeed, having explosive foul burning wet stool all of your life, plus multiple sensory and other debilitating problems, was not normal at all.
Since then I’ve had the privilege of helping hundreds of infants, children and teens in the pediatric nutrition practice I formed as a result. Many had autism diagnoses, many had autism features but no label. Among those, some were already worked up by specialists for myriad physical findings. So, I’ve been honored to be entrusted with countless physicians’ notes, reports, lab findings, and chart notes in these children’s files – an education in itself. Some of these kids were simply worked over by costly specialists and had not enjoyed successful treatment at all. Others were treatment naive – they got a label, a brain scan, and some behavior therapy. Here are things I’ve learned, both as a parent and as a clinician. I hope they help you on your journey with your child, whatever their label may or may not be.
1 – Labels do not matter. What matters is how a child presents. Look at the child. Work them up as though there is no label. Disregard the word “autism” and simply investigate physical presentation. Never accept “Head banging, anxiety, teeth clenching, yelling, fecal smearing, chronic constipation, weird eating habits etc etc are because he has autism.” That is a lie. Autism does not cause any of those things.
2 – When a child feels well, they are happier. They can learn. They can thrive.
3 – Many children with autism do not feel well. They can’t tell you because: (a) They are non-verbal. (b) they have always felt this way and don’t know any better. (c) They are awash in a (treatable) opioid brain chemistry that dulls their sense of pain (ever watch your child with autism bonk his head, hard, and just keep going?)
4 – If your doctor tells you there is nothing wrong, but your intuition tells you something is wrong, your intuition wins. True story: So far, I have not met a mom whose intuition was wrong.
5 – I have not yet met a child with autism with an entirely normal physical work up. I don’t mean a normal physical exam, I mean a normal work up for everything: Allergy, autoimmunity, inflammation, gut flora, mineral balance, food intake, toxicity, or gastrointestinal findings.
6 – There are two kinds of normal: One your insurance company will pay for, and one that is your child’s birthright. Guess which one is healthier?
7 – Every child with autism is in there. They are cogent, and desiring connection with others, even if not on a level you may understand. They may not feel well enough to express these things.
Each and every child with autism or autism features deserves to reach for their innate birthright of vibrant health, and connectedness with their fellow humans. Even those seemingly desirous of a lot of isolation, on some level on their own terms, need connection and love. Find the path to your child’s health and connectivity whatever it may be. I can’t wait to see what other amazing things my son will do in this world (he’s already blown our socks off). Had we listened to the naysayers, dark-outlook and criticizing teachers, meanies, and downright misinformed doctors when he was little, I shudder to think where he would now be (extremely disabled, or, six feet under). Thank you to all the providers and friends who joined our journey to hold my son up with us. It takes a village!
Can nutrition help your child with autism? I don’t know. But I did write this e book to help families approach their health care providers with the right questions to find out. Click here for Five Essential Lab Tests For Kids With Autism
We found that our ASD daughter has sensitivity to wheat, egg, and dairy. Since changing her diet her nose stopped running (it was a big problem that we were tokd she would ‘grow out of’, and she can sit still and concentrate – she is rolling around the house and running around not listening to us. When she has gluten now she instantly becomes hyperactive and yells and screams. Over time if she keeps having she starts stimming and can’t keep still. It is one if those things that I personally would not have believed if I didn’t live with it every day! It is such a dramatic change. Still a couple of digestive issues to sort but overall we are on our way….
My daughter is so complex….doctors have nothing to offer except she has down syndrome. I know there is something i could do to help i just can’t figure it out. She has so much anxiety and is so noncompliant.
CF and nutrition
I’m interested. I teach and have friends w kids w autism
this is so true. As an adult in the spectrum, while I had a lot of help as a child and my parents did a good job with nutrition it’s only been in the past year and a half that I have fully realized the impact that my food sensitivities have on me.