I am a writer and a lawyer living on the North Shore of Long Island. For the past seven years, I have written this blog about recovering my son, Martin, from autism.
We are closer today than ever before to our recovery goal. When we started this journey, Martin did not have functional language. He didn’t respond to his name. He didn’t seem to realize when others were in the same room. He didn’t make eye contact. He had constant meltdowns. He bolted. He couldn’t sleep unless restrained.
Today Martin attends school in a mainstream classroom, albeit with an aide to help with his ADHD. Despite lingering social immaturity, he makes and enjoys spending time with friends. His language, except for the social/nonverbal component, is caught up: His English flows fluently, and he is conversant in Spanish. He uses idioms. He plays chess. He is an experienced skier and is halfway to his black belt in taekwondo. He’s looking forward to joining the school band next year, though he can’t decide whether to specify drums or trombone, both of which he knows how to play.
Like I said, we’re close.
Along the way, I have come to understand more and more why parents and others resist autism recovery as a concept. For starters, the path is arduous, with no guarantee of success. A parent struggling simply to make it through the day—and the night, as autism’s sleeplessness and worry steal the nights—may scoff at the idea of spending hours each day cooking special foods and administering supplements. Then there is the self-esteem aspect: Many parents believe that autism recovery is tantamount to trying to “fix” a child and, therefore, telling the child that something about him/her is “wrong.”
In truth, there is nothing wrong with a child affected by autism. But there is something wrong with autism. “Autism” refers to the external manifestation, the symptoms, of underlying health problems. Autism rates are rising right along with all sorts of childhood immune conditions (many of which, like autism, were previously thought to be only psychological conditions): ADD, hyperactivity, oppositional defiance, asthma, food allergies. Autism results from a messed-up immune system. We, as a society, need to be figuring out what is messing up our kids’ immune systems, and we need to be treating the victims of what’s happening.
My perspective, although steadily gaining acceptance, still lies outside the mainstream. I believe that the mainstream, whether medical or pharmaceutical or environmental policy, is failing the next generation.
Regardless of whether you agree, I hope you’ll check out what we’re up to.
I am a lawyer, with extensive experience in complex commercial litigation. Today, however, my profession is procurer of unprocessed and unadulterated foods, personal chef, home health aide, therapy provider, medical researcher, and appointment coordinator for my seven-year-old son, Martin.
The position is full-time, because Martin is recovering from autism.
To say so openly—that Martin is recovering from autism—is new. For the past several years, I’ve kept my mouth shut about Martin’s recovery process.
When Martin was diagnosed with autism at age two, in October 2010, he was incapable of falling asleep, and often incapable of staying asleep, unless physically restrained. My husband (Adrian) and I slept in shifts, one dozing while the other pinned Martin’s ankles to keep his little legs from flailing. On the worst nights, we had to work together, one holding Martin’s lower body, the other hugging Martin’s arms and shoulders until his little body could find rest. Daytimes, Martin alternated between running in circles and lying on the floor, where he pushed a toy car back and forth, making sing-song noises. Although he could echo words, he could not independently string words together. He had no concept of “yes,” or “I.”
The first months after diagnosis, Martin spent his waking hours undergoing conventional therapies—as much as 40 hours per week of Applied Behavioral Analysis, occupational therapy, physical therapy, speech therapy. Yet nothing changed. He still didn’t sleep, or put words together, or make eye contact. Nothing changed, except that Martin became resistant to therapy.
At that time, under those circumstances, a tip from a friend brought me into conversation with “Annie,” a physician on leave to care for her own children. Yes, Annie told me, her son used to have autism. Now, at nine years old, he was fully recovered. Autism is symptomatic of medical disorders with a genetic component, Annie explained. She treated the underlying disorders, and the symptoms resolved.
That first day, by phone, Annie introduced me to healing diets, genetic profiling, supplementation, avoidance of chemicals and other environmental dangers. Immediately I compiled a binder of research on recovery from autism, which I handed to Adrian with the words, “This is what we’re going to do.” I made an appointment with a doctor who was pioneering the field of autism recovery, and Adrian and I agreed to abandon most traditional therapy and instead begin an extensive course of dietary, biomedical, and homeopathic interventions. “Biomed,” we call the treatment for shorthand.
In the beginning, Martin’s progress was swift. Within six weeks of eliminating gluten, dairy, soy, corn, refined sugar, most fruits and starches, and everything processed or artificial from his diet, Martin was falling asleep unassisted and, most nights, staying asleep. He no longer clenched his gut in pain. As we introduced supplements and other interventions, Martin stopped drifting. His lethargy lessened. He replaced his constant whine “You want, you wan, you wah…” with the pronoun “I.” He responded to his name. Adrian and I were ecstatic.
With the zeal of a new convert, I was ready to proclaim, “Autism can be treated! It works!” But it didn’t take long to discover that, even among fellow special-needs parents, I should keep my enthusiasm to myself. In 2011, the idea that autism is symptomatic of health conditions, instead of a psychiatric or neurological disorder, had not yet entered the realm of what most parents were willing to believe. People who knew nothing of autism recovery hounded me for depriving Martin of a “normal” childhood by withholding cotton candy and pizza. Others accused me of spreading disease by campaigning against vaccines. It didn’t matter that I’d never said a word about vaccines; to be recovering a child from autism was to be one and the same with Jenny McCarthy.
Soon I was hiding the fact that we do biomed. It’s allergies, I said. Martin has food allergies, so I bring his food everywhere. The supplements, I tucked into a cabinet until no one was looking. The B12 injections, I didn’t mention. Shouting autism recovery from the rooftops? Not so much.
But times and attitudes change. What’s going on in the laboratory is starting to catch up with what’s been going on in the field. Media reports are cropping up about the connection between autism and gut bacteria, immune disorder, proprionic acid, mitochondrial deficits, pesticide exposure.
It’s 2016 now. Martin attends second grade in a school that targets speech and language delays. One evening, at an event for parents from Martin’s class, the topic turns to what we do for our children outside of school. Emboldened by the knowledge that at least one of Martin’s classmates follows a gluten- and dairy-free diet, I admit, “We do biomed,” and look for the cold shoulder.
This time, it doesn’t come. The half-dozen mothers, apparently recognizing the term “biomed,” nod approvingly. Two ask me to explain further. One mother says that going gluten-free helped her son, but that she found it too hard to sustain long-term—could I help her with some recipes? Another mother says that three of her four children have some form of sensory issues, and she wonders whether the whole family could follow a biomedical protocol.
And I realize: I don’t need to hide this anymore.
This is our story. We are a biomed family. My son is recovering from autism. He’s not there yet. He still has social challenges and an infinitesimal attention span, and his mitochondrial disorder makes him quick to tire. But in five years, Martin has developed into a kid fully engaged with the world, who makes eye contact, responds to his name, speaks in complete sentences (he’s bilingual), asks questions, has very few repetitive behaviors, swims, rock-climbs, rides his bicycle, ice skates, skis, and looks at his mom’s face for reassurance in difficult situations.
I’ve given up much to walk the biomed path with Martin.
But how could I regret that?