This is the final part of my interview series with Dr. Julie Buckley, author of Healing Our Autistic Children. (Click to read Part 1 and Part 2 of the series.) I want to express my sincere gratitude to Dr. Buckley for writing about and presenting on this topic in a way that has profoundly changed my perspective and approach to life. I hope that you will enjoy and take something powerful away from this interview series.
LAW: Part 2 of your book is dedicated to guiding parents through biomedical treatments with their child’s doctor; please share a little bit about the standard steps to biomedical recovery.
JB: The hard part about autism is that there is little that is “standard” about the approach we use. It is a highly individualized process – each child is unique in their genes, in their environmental exposures over the course of their short lives, and in the manifestations of the disease process. It takes a careful eye observing, and careful ears listening to a parent to find a starting point for working toward recovery. The vast majority of our children have bowel problems, so this is where I usually focus my attention first. Nutrition is of paramount importance, so as we move most of our children toward a gluten free casein free diet, I also try to make sure folks don’t replace the SAD Diet – the Standard American Diet – with a gluten-free, casein-free SAD Diet. I try to make sure that we’re finding ways, (sometimes very underhanded ways!) to get veggies, especially the green leafy veggies, into the diet. Notice I didn’t say fruits and veggies – fruits are much higher in sugars than veggies and are not equivalent. In the last year, I’ve also discovered the incredible value of putting the healthy fats into our diet and have, as a result, been encouraging folks to use coconut oil and nuts and seeds much more than I did when I first started my daughter on the diet. Most of our children have enough struggles nutritionally that starting a good multivitamin, quality omega 3 fish oils, and probiotics are good ideas. Many children also do well with digestive enzymes that contain DPP IV. At the first visit, I’ll usually get lab work, and then, as I described in the several chapters of the book, we begin a serial approach to the individual child, their individual labs, and their individual responses to the therapies we try.
LAW: On page 180 of Healing Our Autistic Children, you discuss the worry over how out-of-sync bodies tend to have a higher propensity for malignancy; I think this applies both to our children with ASD and those of us working ourselves to the bone to heal those children. What would you say to parents about the management of health for themselves and their children?
JB: If there’s one thing I would impart into the psyche of we parents it would be that BEING BALD IS NO FUN!! We MUST take care of ourselves. Jo Pike, the founder of the National Autism Association, was a selfless woman who cared for everyone else and really put herself last. I was honored to be involved in her care after she was diagnosed with Stage IV lung cancer. Unfortunately, I had recently learned about cancer first hand, as I now count myself among the breast cancer survivors. In the last months of Jo’s life, she worked harder at taking care of herself than she had in many years. I have put more energy into making sure I maintain my health in the last two years than I did for the previous 20. And Jo and I spent a lot of time talking about how important self-care is – we talked about the importance of putting on your own oxygen mask first.
The science of stress and what it does to our bodies is well documented in the medical literature. Stress is essentially a toxin, and it induces the same chronic inflammatory response and the same oxidative stress in our bodies that it does in our children. Most of us are unwilling to spend very much money on ourselves, so the trick is to find inexpensive, cost-effective ways to take care of ourselves.
I encourage parents to eat the same sorts of foods, GFCF, organic, veggies, as their children hopefully are. I encourage them to actually STOP and eat, sitting down, at a table. I encourage them to go walk the parking lots at the therapy offices while their children are doing OT. I focus on sleep for the child so that mom and dad get some uninterrupted sleep. And we talk about dates – date nights where you may NOT talk about autism, and you try to remember what you liked about each other, what you talked about before there were kids, before there was autism.
I spend a lot of time teaching folks about the usefulness of breathing exercises and the usefulness of the gratitude based meditative techniques that the people at Heart Math are teaching us to use. They are inexpensive and very helpful, but that’s a whole separate book!
Given that the apple rarely falls very far from the tree, metabolically speaking, parents are rarely wrong to take a good multivitamin, a good omega 3 fish oil, a generous dose of Vitamin D3 making sure that they have levels checked and a good probiotic. Those are affordable and useful supplements.
It’s important to remember that if we don’t take care of ourselves, if we don’t eat and exercise and value our own selves, our own lives, we significantly increase the risk of major life-threatening illnesses. That doesn’t help our children at all. Put on your own oxygen mask first – your children would rather do this autism thing with you than without you!
LAW: Are there any organizations or foundations you support and would like to tell our readers about?
JB: The world of autism is supported by myriad non-profits with many purposes and goals. My daughter has really benefitted from many people’s efforts and foundations along the way. There are several that really stand out in our personal and my professional experience.
Bernie Rimland’s ARI – Defeat Autism Now conference in April of 2004 was a life changer for me. I’ll never forget the presentations that were made there and how much it did for me being able to help my daughter. I will never be able to express my admiration for Sid Baker, co-founder of DAN! (now known as Defeat Autism Now) and one of the most astute clinicians I will ever have the good fortune to know. While ARI is now changing their focus away from clinician training and really focusing in on research, their legacy in jump-starting the concept of autism being a treatable medical illness is legendary.
TACA is an acronym for Talk About Curing Autism and was founded by one very determined mom, Lisa Ackerman. Once committed to remaining a local non-profit in Southern California, TACA went national a few years ago when Jenny McCarthy lent her voice to their cause. TACA is a wonderful starting place for parents beginning the autism journey. They have a wonderful mentoring program, and have published a great workbook called The Journey Guide. Lisa was kind enough, when we were starting HEAL, to share all of her materials with us so that we could model ourselves, at least in part, on much of what she created.
Our family has been so blessed by the joy that Flux brings to our daughter. Project Chance trains service dogs for children with autism, and Flux came into our lives as a puppy, we had puppy dates and puppy sleepovers for a year with her, and she eventually moved in with us full time. She has so increased the scope of what is possible in our home – we’re back on airplanes again, which means Flux has taken her girl to Sedona, the Grand Canyon, Lynchburg, Atlanta, Philadelphia, Fort Lauderdale, Tampa, and we’re planning on Toronto in a few months. Flux is teaching Dani to love another living being in ways I can’t, and the responsibility of caring for her dog has been a wonderful maturation tool. As time goes by, the two of them are a seamless team that really are almost one being when they are working together.
HEAL will of course, always be my pride and joy. Having co-founded it, working to put flesh on our vision for what our community needs as we heal our children’s bodies and the lives of all those they touch brings a lot of joy. HEAL (Healing Every Autistic Life) has been working toward putting a HEAL House on the map, and while working toward that goal, has funded many programs looking for the very best that we’d like to bring into the HEAL House. We have been very blessed to have a community that has truly wrapped its arms around our children.
My sincere thanks to Dr. Buckley for taking the time and effort to answer my questions for this series. My best wishes go out to her and Dani as they continue on their journey.
Leigh Attaway Wilcox is Editor in Charge of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007 (now available for digital download via Moving Picture Books). Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.