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.”
This article appears in Apr 24-30, 2013.
Thank you so much for covering this story! So many media outlets want to bury their heads in the sand because this topic is too controversial. What you’ve done here is give other families hope & a starting place at recovering their children. Excellent work!
What a great story – thank you so much for doing it. I’m glad that the word is getting out that parents need to do their own research.
Thank you for putting this story out there – so many kids being affected by this epidemic, and so many parents know the truth about what is happening. It’s time we stopped being afraid and step forward and face the real facts. This is a real epidemic we are facing. Thank you, Kim, for being brave and standing up for TRUTH.
Great story!!!! What a fantastic mom. Thank you for not ignoring the problem or the controversy. It seems like the media RUNS from dealing with Autism and what the families have to say about it. BRILLIANT!!!
Thank you for this story and allowing a parent to speak their mind, speak to their personal truth. There are tens of thousands of us warrior parents out here, few of us have been given a voice as you have done here. We saw what happened to our children and we have made a difference in their lives and outcomes by disregarding every piece of so-called expert advice out there. It is time more people started listening to parents like this one.
Thank you so very much for doing this story and capturing such an inspirational woman….it is a journey that inspires hope but also raises questions. Very real questions that need answers.
Thank you for your excellent coverage of the Thinking Mom’s. They must never stop until every single parent is a Thinking Parent.
This is very informative, thank you for sharing your story. Anyone that doesn’t see the great number of sick, sick, sick children in the USA must have their heads stuck in the sand. Something has to change and I, for one, am happy to see this discussion.
The BEST article I have ever read in the past 13 years regarding Vaccine Injury, special courts and protections of the industry, lack of acknowledgement from the medical establishment and that we are healing our kids through alternative and bio-medical treatments. Simply Awesome!!! Thank you!!! Signed Warrior Mom to vaccine injured child who is HEALING THROUGH BIO-MED and ALTERNATIVE MEDICINE. :0)
Thank you so much for such a great article! I love Kim and all the Thinking Moms (and Dad!). They have helped me so much on this journey with my son. The media is always hesitant to cover this subject, but you did so beautifully.
@jenny – It’s not as simple as that. Read the book and get the whole story. Also, Google Alex Spourdalakis. Then we’ll talk about abuse.
This super hard-working mama has not only pulled her own son out of the constant sickness, tantrums and sensory overload of Autism but she has also helped to pull countless other kids out too by supporting tons of parents on the same journey. She is an inspiration and her son’s progress gives hope to so many of us who are not as far along in the journey. She speaks the truth. Our children are not alright and toxic overload is to blame. Her son’s terrific health and academic progress are a testament to her efforts.
Wow, Tex… read much? Nowhere did the article state that these parents were trying diets and supplements based off of something they “read on a blog” on the Internet. These parents have done EXTENSIVE RESEARCH to determine how they can best improve their children’s health. The blogs have provided them a community for sharing, venting, and networking, yes, but I know Mrs. Spencer personally and I can tell you with 100% certainty that any special diet or supplement she has used with her child has been researched thoroughly. Your comment is so far off-base that it makes me wonder if you’re a troll for Big Pharma….
My apologies… my previous comment should have been directed to “Jenny.”
What a great article. I appreciate hearing the truth of someones own story. Doing your own research and treating medical concerns that are ignored by medical professionals should have never been neccessary, yet here we are. Keep it up! A real journalist writes a story others are afraid to.
Jenny, who do you work for? Only a troll from a pharma company would post such an asinine comment.
These parents are not doing one single thing to harm their children. They are researching MEDICAL information and then making an INFORMED decision on what is best for their children.
I hope you never, ever have to face autism. It is a life-changing disorder that changes everyone it touches.
I know. Autism affects our youngest child. Until you walk in my shoes, don’t throw stones.
@Jenny is a “i-troll”, he/she likes to post on blogs and articles that tell the truth about what has happened to our children. Disregard if you are a parent looking for answers. There are many, many parents that are recovering their children from VAX induced “autism”. I am one of them. This is a excellent article. Thanks for taking the time to write a great piece. Thanks also to TMR for an excellent book!!!
Thank you for this wonderful article! So many parents are screaming from the rooftops that our kids are SICK and we are being told that is their ‘autism’ and nothing more. Please continue to publish articles that give families hope that autism is treatable.
Great press on a very important issue. We are entering a new phase in autism therapeutic protocols. Autism is a blanket diagnosis for disorders that manifest because of real biological conditions that are triggered by an excessive environmental toxic load. Treating these biological conditions and clearing the body improves quality of life and sometimes cures autism. I have to laugh at the ridicule that some of the “unconventional” therapies bring. The FDA has approved chelation drugs such as Ferriprox (deferiprone) for the removal of heavy metals for example. But if a provider uses it to remove heavy metals in a child who happens to have autism it is deemed abusive (Jenny). Medscape recently published an article regarding the benefits of Hyperbaraic Oxygen Therapy, but suddenly if it is used on a child with autism then the children should be removed from the home. This is utter nonsense! Not treating the biological conditions that our children suffer from is the tragedy. Autistic children have higher rates of GI pathology, epilepsy, schizophrenia, CNS/Cranial Anomalies, Diabetes Melitus Type I, Poor nutritional status, Muscular Dystrophy, Sleep Disorders, Neurological Processing Disorders, Food Allergies and increased levels of heavy metal toxicity. Properly diagnosing and treating these deficits has been a proven strategy in moving children off the autistic spectrum.
http://www.autismrawdata.net/rehabilitatin…
What an aweome article! I’m SO happy to read this! I am a mother of 2 children with Autism who’s story reflect many of the stories in this book. My children are now healthy and thriving. We are NOT crazy and it’s nice to finally see that reflected by the media. Thank-you to the Thinking Moms and thank-you for this article!
Thank you for a great article. I applaud Mrs. Spencer for seeking answers for her son and for her courageous advocacy. I did purchase the book and it is a must-read for every parent and grandparent. With 1 in 50 children now affected, unfortunately, the Spencer’s story is becoming more common. We must have an unbiased study as to what is truly happening to children, especially after vaccination. The dogma of mainstream medicine regarding vaccines must change. We absolutely need an honest, forthright dialogue between parents, the medical community and public health officials regarding the safety and actual risks of vaccines. We need studies free of financial influence from the pharmaceutical industry and bias from a public health community desperate to save a flawed and broken immunization program. Please continue to follow this story as it can positively impact so many families.
Thank you! Thank you! Thank you!!!
Thank you for covering the true side of autism. The Thinking Moms’ Revolution is an amazing group of parents offering hope for those of us on this journey. Kim’s progress with her son is an inspiration as I am recovering my own son. It’s time the media took a closer look at this epidemic and started demanding answers.
I am accused of being an I-troll, and also working for big Pharma. Ridiculous. I am the parent of an autistic child. When I bought the book, I thought that there was actual scientific research cited. However, the sources quoted consist of revelations by only a few actual doctors. Most of the so called ‘documentation’ consists of blog posts, or “information” obtained from age of autism – not a valid scientific source. I repeat. NOT VALID. (Do your research!! 🙂 ) The remaining scientific community of thousands (not to mention all of the scientific journals that debunk the link between vaccines and autism) is completely ignored. It is funny to me that people say “educate yourself”, but they don’t bother to do that. They just want us to believe what they have to say, because of some presumed cause and effect they believed they witnessed. They would rather quote the bloggers in this book and listen to Jenny McCarthy, then actually read valid scientific documentation.
I understand that autism is an emotional issue. This book is an emotional book – but do not mistake it for scientific fact! The book is propaganda. It advocates experimenting with childrens health using unproven methodology. It frightens me. This is Munchhausen by Proxy out of control – and advocated by those that should know better! Buyer beware.
PS – my child was not vaccinated. I was not given shots during pregnancy. Yet my story is invalid?
Thank you for covering this story. I am a parent to a “recovered child’. I was told there was no hope, to start considering instutionalizing my child at age 4 because doctors and science claimed there was nothing else to do. These Moms, and the thousands of us that they have spoken for, have proved them wrong. Our children prove them wrong every day. We do read the science, we do study the body, and we apply basic knowledge in order to help our children. The information is there, the studies are there and it is a shame that medical professionals and science are slow to react…however it doesn’t make it less true. It wasn’t that long ago that we repeatedly heard there was no autism/gi connection…now that is accepted by the AAP. Anyone who has bothered to read the book, would clearly know that this is not specific to vaccines, not about celebs, not uneducated women, not propaganda…it is simply personal stories about these women and all of us across the world who are forcing answers to questions that have been avoided for years now and not accepting this disregard for their children that has been the norm. I applaud you for covering this story, the Thinking Moms book, and this wonderful Mom’s journey and sharing hope and truth with others!!! This book should be a must read for everyone…it was filled with amazing courage and even if not effected by autism will make you find your inner strength.
Thank you for writing this story, Jessica. It is so similar to my own child’s story. We (thinking parents) pore over medical journals and studies, trying to find out why our children are so sick and how to help them. The science is out there and we are reading it. Thank you for boldly giving readers a glimpse into the environmental factors at work in the current epidemic of children’s ill health and using Kim’s story to urge parents to do their research on the front end concerning food, environmental toxins, and preventive medicine.
Why is this such a controversy unless there’s something to hide? The book is amazing. I thank all the moms and the one dad who helped write the book and bring all this information to light. We need more people like you in the world! That’s for sure. What I enjoyed most about the book is the incredible amount of hope you’ve given to other parents. It’s a book everyone should read. Really, I mean that. Parents, grandparents, friends of parents whose children have autism. Every member of Congress! There’s no way you could just blindly vaccinate your child after reading this book.
What an amazing piece of journalism. I am so glad to see this covered. I have a child with Autism and was told there was nothing I could do beyond going to a support group to ‘get through it’. Instead, we worked with a brilliant doctor and treated his failure to thrive, chronic constipation, his extremely low vitamin D levels, his mineral deficiencies, parasites–who would know that, living in America? and many other issues that medical testing revealed. Lo and behold, as we treated each medical issue–as we would in any other typical child–he got better and better and is now a thriving healthy child. We still have some medical problems to tackle, but the light at the end of the ‘autism’ tunnel is there. There are thousand of parents doing the very same thing. And there is a lot of hope. It should be noted that Kim Spencer worked with medical doctors, and worked in a pediatrician’s office and is not some maverick flying blind performing experiments. Her proof is a happy, healthy child who has recovered from ‘autism’, who has friends and is mainstreamed in the school system.
“To teach is to learn twice”, here are ideas and suggestions to give many children the opportunity to have what many of us take for granted. Well done!
Thank you for addressing a very important issue that needs to be brought to light. As a parent of a son that was adversely impacted by vaccines in 1993, after being born healthy, I feel if this had been broached then we’d not be discussing the epidemic increases in what is causing a vast degree of illness in American children today. We have to look at why our children are amongst the sickest in the world for a nation that is suppose to have a high quality of health care. Vaccinations are not working and environmental factors are also key. I applaud your excellent story on this and Ms. Spencer’s courage to share her family’s story along with the others in the book. Hopefully people will start listening, educate themselves on choices, and realize that if they did so two decades ago we’d not have this transpiring now. Thank you again.
I hear ya Melissa, it’s scary to realize that no two of our kiddos are alike, no two react the same to vaccines, diet change, behavioral intervention therapy, or anything! I’ve come to the startling realization that NOTHING that is covered by my health insurance (drugs, medical procedures, ect.) will help my child get better. It’s my sole responsibility and charge to make that happen by observing for small changes that lead to bigger ones. It takes a lot of courage to make decisions when no one knows all the answers. The books on how to heal our children are still being written, please share with us your story.