A Mother’s Story
Autism spectrum disorder (ASD): a neurodevelopmental disorder characterized by varying degrees of social, communication, and behavioral difficulties. It may be associated with varying degrees of gastrointestinal, immunological, and neurological dysfunction, as well as chronic inflammation and oxidative stress, disordered methylation chemistry, detoxification impairments, and nutritional deficiencies. Many consider autism to be a neurological difference as a result of normal variation in the human genome, and not a disorder to be treated or cured.
My marriage hasn’t been typical from the start—come on, a chiropractor and a medical doctor? My husband thought he was hilarious when he would ask, “At what point in the office visit do you bite the head off the chicken?” Or he would yell “Chiropractors!” as we watched the Undead leaping out of the walls and ceiling of the temple in Indiana Jones and the Kingdom of the Crystal Skull. Little did we know how essential our sense of humor and our training in the healing arts would be as we started our family.
When the first of our three sons, Evan, was born, he was remarkably sunny in nature. He didn’t have typical sleep patterns, only napping for twenty to thirty minutes out of every ninety minutes, around the clock, seven days a week. When he had a bowel movement (numerous times a day), they were volcanic and projectile, and I could hear the ominous rumbling a few seconds before liftoff.
Language was a gift for Evan, and I always joke that he came out talking. He never stopped talking, which is more exhausting than you would think, and he could read by the age of three. But I also began to notice his sunny nature had given way to all-day irritability and whining. He was restless and roamed the house carrying objects from one room and setting them down in another, creating a level of chaos that became overwhelming.
He was bright and precocious, constantly engaged in learning new things and asking questions I couldn’t answer, like: “Does Jesus have a penis?” Impulse control was not a strength.
By the age of 5 or 6, his irritability had progressed to entire days punctuated by anger and screaming, and it wasn’t unusual for him to flip over an armchair or the couch when he was having a meltdown. If we sent him to his room, he would kick a fresh hole in the drywall in the upstairs hallway each time. Soon, there were dozens of holes lining the hall that led to his bedroom. We could usually tell from the moment he got up if it was going to be a good day or a bad one.
His behavior became so unpredictable, I couldn’t take my eyes off him for a minute and had to follow him wherever he wandered. By now, we had three boys, and I had to hire a housekeeper just to get the laundry done and get a meal on the table. Alan was working long hours as a new associate, and my days began to take on a tinge of exhaustion, desperation, and panic. I just wasn’t nailing this motherhood thing, and the rolling eyes and condescending remarks from family members, friends, and strangers only confirmed it. Life felt like a test we hadn’t studied for.
As Evan got older, my world got smaller. I dropped out of clubs and volunteering and abandoned my passion for horticulture (a hobby that earned me the name “the African violet lady”). I still distinctly remember the time I first thought, “I need to find Janet; I can’t find her anymore,” and the feeling of desperation that filled me.
My husband and I would split up to care for the boys in a “divide and conquer” fashion on outings and vacations, going as far as to take separate plane flights and sit at different tables in restaurants on the bad days. At one point, we even considered buying the house next to us, as Evan became intolerant of the noise level and bustle of a busy family household.
Autism is isolating. Eventually, Evan became the child who didn’t get invited to birthday parties or playdates, and no one wanted him on their team. He was the first one to be yelled at when something went wrong and always the one who got the blame. Our home was filled with yelling and chaos. Strangers would suggest we medicate him or spank him harder. His heart was broken when his best friend wasn’t allowed to play with him anymore.
After years of being told Evan was just “all boy,” and that his issues were due to our terrible parenting skills, we finally realized he had what was then called Asperger’s syndrome. (This term has since been replaced by the umbrella term of autism spectrum disorder, or ASD.) I went through all the stages of denial and grief, not because my son was autistic, but because of the bleak outlook painted by doctors at the time. We were told there was nothing we could do and were offered various medications.
We felt helpless to reach Evan at times. He would be destructive and angry, but later would crawl up on my lap seeking to be comforted. “Why do I do those things?” he would ask. Once in the midst of a colossal meltdown, he reared up momentarily, looked us in the eyes, and clutched at our arms. “Don’t give up on me,” he shrieked, before sinking back into the violent, bucking meltdown. Alan and I were speechless. Later, he explained that he knew his behavior was so “bad” that he was afraid we would give him away. Eventually, people began to suggest that we would need to put him in an institution if he didn’t calm down.
Thanks to a childhood friend who directed us to doctors trained by the Autism Research Institute, we discovered that children on the spectrum aren’t mentally ill or inherently violent, that they have underlying gastrointestinal, immunological, and other metabolic dysfunctions that cause many of the problems Evan was experiencing, and that he was in a lot of pain and discomfort. We began to travel to visit famous doctors. I began to attend conferences and clinician training. I ordered so many books from Amazon that I started a Lending Library for other autism parents. I was delighted (and tormented with guilt) when, after a mere three weeks, a special diet cleared up 80 percent of Evan’s angry, violent behaviors. How had we not known he was in pain all those years? I couldn’t sleep at night, thinking of all the other little boys and girls who were in terrible pain but not receiving any help. I went through several phases, including being a “mother warrior” and looking for a cause and a cure.
We learned that there are medical challenges on the spectrum that are unseen. The DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) description of autism spectrum disorder is what we know, what we see, what we expect. There is a tendency to think that irritability, gastrointestinal problems, sleep disruption, and difficult behaviors are just part of autism. They are not. They are signs of deeper problems that, when ignored, create difficulties with irritability and mood, behavior, language, cognition, and mental clarity. We learned why everyone with ASD is different and that what’s miraculous for one child may not have any effect on mine.
Evan’s behavior smoothed out as his health improved. He wasn’t irritable or aggressive anymore. He became happier and regained self-control. Best of all, he became a good sleeper.
We are asking individuals on the spectrum to do their best while they feel their worst. Every day they try to power through a fog of underlying health issues while learning social skills, language, communication, and their ABCs. Our management of ASD is directed at the behaviors we see, but we are completely missing and leaving unaddressed the silent medical issues that are causing those behaviors. If all behavior is communication, we are missing the message. The behavior is not saying, Hey, I need a little more risperidone here. It’s saying, “I don’t feel very good.” The good news: There are simple ways to correct and restore their health. And that opens the door to other developmental progress.
This book is not about treating, curing, or preventing autism. It is about restoring, supporting, and maintaining vibrant health on the autism spectrum. You don’t have to change your child, but you should help him feel better so that he can have his best chance of success and independence.
I began to teach and share with other parents what I learned—in local, then state, then national workshops. I took more and more training in the biomedical aspects of ASD. Patients were traveling to my center from twelve states, and I finally realized that, kind of like Forrest Gump,I had developed a straggly band of followers.
I never dreamed that my life’s work would be in autism. That table wasn’t there on career day at the high school. It feels good to complete the circle and give back to the autism community by writing this book. Here, I’m sharing protocols I have developed that merge the science showing that individuals with ASD may benefit from natural supplements with the mixed results one gets in real life. This approach improves outcomes.
Although these protocols may seem simple, they are the result of years of trial and error at my center, Autism Health, and they are born of a desire for simplicity, safety, and science. While I don’t want you to think for one minute this is all your child needs, these protocols will address the most basic needs while restoring and supporting vibrant health on the spectrum.
I suggest that you start by reading this book from beginning to end. Then, use it as a resource to dip into as needed. You may find yourself returning to a particular chapter or section again and again. That’s okay. Progress doesn’t happen in a straight line. I encourage you to write to me and let me know how you’re doing. You can reach me via my website, www.LoveAutismHealth.com, or [email protected].
I know how much you want to be able to help your child. I understand—I live!—your hopes and dreams for that child: better language and eye contact, improved mood, mainstream schooling, good social skills, independent living, and so much more. It is my sincere belief that the information in this book can play a vital role in helping your child achieve those dreams by addressing and supporting his or her health challenges first. I hope you find that magical missing piece in these pages.