Kim Spencer will tell you that she didn't mean to become an activist.
When her son was diagnosed with autism 10 years ago, the Statesboro native and former TV reporter wanted to know why he got sick and what she could do to make him better. Unable to find explanations from her doctor, she found suggestions online that seemed to lessen her toddler's violent tantrums and increase his communication, like removing wheat and dairy from his diet.
She also began researching environmental toxins and sought out alternative treatments like homeopathy and chelation therapy that removes heavy metals from the circulatory system. Along the way, she realized she would have to fight the medical establishment to see her approach verified.
"No one wanted to talk to us about it," remembers Spencer. "Everyone called us crazy."
But in dozens of chat rooms and comment threads, Spencer and her husband, Sam, found hundreds of other parents seeking answers and trying alternative therapies. With few exceptions, all of them were confused, angry and lonely in their struggle to raise a child — sometimes multiple children — with the cognitive delays, gastrointestinal disorders and unsociable behaviors collectively categorized as Pervasive Developmental Disorders, also known as the autism spectrum.
"Most of us got the same advice from our pediatricians, who would suggest some speech therapy or an occupational therapist, then they'd say 'check out your local institutions,'" says Spencer, whose son, Patrick, is now 12. "That's basically what many of these mothers have been told: Love 'em, take 'em home, but that one day your kid will have to be in an institution."
Frustrated with the lack of inaction and useful advice in spite of the rocketing rates of autism-related diagnoses, the Spencers and other parents found comradery and confirmation in the online underground.
From Savannah to Montana to Malaysia, they shared their suspicions that their children's illnesses may have in part been caused by processed foods, overprescribed medications and too many vaccinations.
Their theories were often rejected by their doctors and even their families and friends, but they continued to develop their network. Thanks to Facebook, they were eventually able to see photos of one another's children, and what began in those early chat rooms has evolved into a vigorous community of 23 mothers (and one dad) who call themselves the Thinking Moms' Revolution (TMR.)
They meet face-to-face only once a year, at the AutismOne convention in Chicago, but TMR has built a formidable presence around the world with their constantly-updated blog. Their stories have been collected in a new book, The Thinking Moms' Revolution: Autism Beyond the Spectrum.
Already in its second printing, The Thinking Moms' Revolution rose to 114 in overall Amazon rankings on its release date. Spencer will speak and sign copies at the Sentient Bean this Sunday, April 28.
Known on the blog and in the book by their online nicknames, the parents of TMR have wrested authority over their children's health away from the medical community and become experts in areas such as autoimmunity and mitochondrial function (not to mention poop, a vital factor in assessing intestinal health.)
Here's the revolutionary part: While autism spectrum conditions continue to be classified in the Diagnostic and Statistical Manual of Mental Disorders, the parents of TMR have had varying degrees of success in reversing their children's symptoms from a biomedical perspective.
"A huge running theme of the book is how mainstream medicine dropped the ball. We were left on our own to figure out what do with our children," says Spencer, who has worked with over 300 local families as an autism advocate in Dr. Ramon Ramos' pediatric office to educate them about alternative therapies and possible preventions.
"We're not just about autism — though many of the TMR kids have that diagnosis — but these stories are also dealing with apraxia, ADHD, Asperger's and other chronic conditions that are becoming more and more common in the classroom."
In 2007, the Center for Disease Control reported that one in 150 children falls on the autism spectrum. Just five years later, the CDC amended that ratio to one in 88. Numbers released in March 2013 put the statistic at one in 50. The rise is alarming, though many believe the increase is due to better documentation. Spencer and the other Thinking Moms dismiss this as flawed logic.
"We're definitely facing epidemic numbers here, and it's not because parents are searching out a diagnosis or because we're counting better. There's no way that this is a phenomenon that just has a new name. Where are the one in 50 autistic adults? They don't exist," argues Spencer, who spoke in front of the CDC last spring.
"I didn't grow up with any autistic kids. I remember the classroom at the end of the hall with children with issues, wheelchairs and other disabilities, but none of this spinning, screaming and banging all day."
Noted pediatrician and author Dr. Bob Sears confirms that he is seeing more and more healthy infants develop autistic symptoms in their second year.
"What angers me is that the medical community should have started examining this question 20 years ago," writes Dr. Sears in the book's forward. "Instead (almost) all put their heads in the sand and decided there was no increase, there was no epidemic, so there is no reason to examine why."
Scientific studies have not yielded a definitive cause of autism, though genetics appears to be a top risk factor. While genetic predisposition exists, TMR parents assert that their children's illnesses were triggered and exacerbated by environmental factors that impede normal neural development, including chemicals in food and water.
"One of the bigger things has been food. It plays a huge part in a lot of our children's issues, including sensitivity to gluten and casein [a dairy protein.] So it doesn't stop with autism; we've had to become food advocates as well," says Spencer, who regularly posts information regarding pesticides and the unproven safety of genetically-modified foods to her Facebook wall.
By far the most controversial claim by the TMR community and other parents is that vaccines played a part in their children's illnesses. The theory that vaccines have are behind the autism epidemic has been repeatedly ridiculed by the scientific and medical communities, though thousands of lawsuits citing vaccine-related injuries have been filed and settled in a U.S. Court of Federal Claims. (Also known as "Vaccine Court," this government-regulated, no-jury judicial body was established in 1986 by the National Childhood Vaccine Injury Act and absolves the pharmaceutical manufacturers of any responsibility for injury.)
Those who dismiss the connection between vaccines and autism often cite a series of studies disproving the claims, though websites like Fourteenstudies.org point to flaws in the research. Dr. Bernadine Healy, the former Director of the National Institute of Health, put herself with a growing number of public policymakers willing to rethink — and re-research — the prevailing dogma.
"I think that the government or certain public officials in the government have been too quick to dismiss the concerns of these families without studying the population that got sick," wrote Dr. Healy before her death in 2011. "I think public health officials have been too quick to dismiss the hypothesis as irrational without sufficient studies of causation."
Spencer and others say the problem isn't only the vaccines themselves but the frequency with which they're given: In 1983, children were required to have ten shots before the age of 5; the number is currently 36, often up to five shots for ten different diseases given in one day. That much stress on the immune system can cause terrible complications, from high fevers to gastric distress to brain damage, according to the stories in The Thinking Moms' Revolution.
They also point out that the proof is in how their children's bodies have responded when treated for inflammation, enzyme deficiencies and other conditions that accompany vaccine-related injuries. After 10 years of treating her son from the perspective that his lack of speech and development came from an inability to handle vaccines, Spencer says he has recovered enough to enter middle school as a mainstream student who excels at art and math.
"Our level of success has been incredible — we're one of the lucky families. Not everyone responds the way my son has responded," she says. "I'm not saying that vaccines are a hundred percent of the problem. But they were a hundred percent of my son's problem."
Spencer wants to make clear that TMR's agenda is not to rid the world of vaccines but to encourage parents, doctors and policymakers to take into account that not all bodies have the same ability to withstand the current vaccination recommendations.
"We need to take a giant step backwards. There's no testing for safety in pregnant women in vaccines but they're forcing flu shots, dTaps and MMRs on them. Why do we vaccinate a 24-hour old baby against HepB, a sexually-transmitted disease? It's absurd," she sighs.
TMR has many goals for the next several years, including presenting to the Congressional Oversight Committee led by Darrell Issa (R-CA) and receiving its non-profit status so it can raise funds to help other families receive some of the complementary care that helped its children.
The Thinking Moms plan to march on Washington, and maybe fund their own scientific study about environmental factors and autism. Spencer would also like to see autism spectrum conditions be reclassified as medical issues rather than psychological.
But by far the most important part of the Thinking Mom's Revolution is to inform other parents.
"You study what carseat to buy or what the safest stroller is, but it's even more important to look at what's in your food and medicine," says Spencer. "We're the cautionary tales. What if I'd had this information before Patrick was born? I'd give anything."
Read the package inserts, don't be afraid to ask questions, she admonishes.
In other words, "Be a thinker. Be informed. You can come to your own conclusions. We just want you to know."