“The doctor just dismissed my concerns,” a mom of three sons told me. “He said, ‘Mrs. G., nothing’s wrong with your son. He’s a boy. He’s just developing slower, he’ll be fine.’”
Mrs. G. knew her son wasn’t okay with every fiber in her being.
She looked at the doctor in surprise. I have two older sons, she told the doctor. I’m not a first-time mom. I have a degree in early childhood development and I’ve been a teacher my whole life. I’m not imagining things. Something’s wrong!
Her doctor walked out of the room without a backwards glance.
It wasn’t until almost a year later that a medical professional diagnosed Mrs. G.’s boy with the problem she already knew he had: autism. Since early intervention can be so helpful and her son is still so sick, she cries when she thinks about how much precious time has been lost.
“I’m broke. We spend every penny we have on interventions.”
“I called the pediatrician and he hung up the phone on me.”
“Our family has been betrayed so many times.”
“I just don’t know what to do.”
These are the voices from the trenches, the moms and dads of children who have broken brains and ailing bodies. I met dozens of them at the AutismOne 2013 Conference, which was held in Chicago, Illinois from May 23rd to May 26th this year.
“We can reverse this epidemic.”
“My child has recovered from autism. He’s no longer on the spectrum.”
“We are thinking moms and we won’t be silenced.”
“We’re in this together and we’re fighting this fight and we are going to win.”
These, too, are the voices from the trenches, the moms and dads of children who have broken brains and ailing bodies. For as many moms who burst into tears at this conference, there were twice as many (often the same ones) who burst into applause, told the best bad jokes, and knew how to have fun. Autism mamas know how to rock the house.
Some children who were diagnosed on the autism spectrum have recovered physically and mentally. When evaluated now they are found to no longer be autistic. What mainstream doctors, who maintain that children with autism cannot get better (and often tell parents to institutionalize their kids) say when they hear about this is that the original diagnosis—even if it was confirmed by four or five specialists—was simply wrong. They say children cannot recover from autism. Instead of seeking out these families, scrutinizing their medical records, and listening to their stories, they dismiss them.
But for every doctor who has kicked these parents out of their practices (for asking too many questions, for calling the office too often, for not vaccinating their already severely immunocompromised children), there are other doctors—many of whom presented their recent clinical findings at the conference—who are trying to fix the damage, listening to parents’ concerns, working tireless both to figure out the cause of what is clearly iatrogenic damage as well as to find solutions.
I don’t have a child with autism.
I don’t know what it’s like to have a child who has lost the feeling in his fingernails, who has constant and chronic diarrhea, who bangs his head against the wall, or who stims (self-stimulates) in other ways.
I don’t know what it’s like to have to clean feces off the walls. I don’t know what it’s like to have a child who cannot be left alone for one second of one day. I don’t know what it’s like to realize that I cannot ever die because I don’t know how anyone else can possibly take care of my kid. I don’t know what it’s like to be a single mom and have to institutionalize my teenager because he has become more than I can handle.
I also don’t know what causes autism.
But I do know that we are in the midst of an autism epidemic, and that America’s children are sicker than they’ve ever been.
In addition to autism, we are seeing rises in asthma, food allergies, Type 1 juvenile diabetes, childhood cancers, Crohn’s Disease, celiac disease and other disorders. The debilitating health problems are hitting my family: my cousin’s son has Crohn’s Disease. It’s hitting my friends: One good friend has a child with Type 1 juvenile diabetes, twenty others have children on the spectrum. It’s hitting my school: four children in my daughter’s third grade class had autism spectrum disorders. It’s hitting my neighborhood: two children at my son’s school have been diagnosed with cancer in the last three months.
I also know that we are vaccinating our children in America in a way that is literally unprecedented in human history, as my colleague Louise Kuo Habakus said during our panel entitled, “Stories, Science, and Social Change.”
I also know that we are vaccinating newborns against a sexually transmitted disease (Hepatitis B) found almost entirely in prostitutes and drug users in the absence of any medical indication without knowing what kind of long-term ill effects we may be creating by introducing a vaccine into a completely immature human immune system.
And that we are exposing unborn fetuses more often to more sound waves than ever before, without making sure that there are adequate safety checks in place on the ultrasound equipment, without ever having studied whether ultrasound exposure is safe, and without knowing what the implications of the fact that prolonged ultrasound exposure causes abnormal brain cell migration in rodents means for human brains.
I also know that there are now tens of thousands of parents who are telling the same story: their child was developing normally, making eye contact, saying words, babbling, engaging in pretend play, looking in the same direction when a parent looked at something. Then they took their baby in for yet another round of shots (these parents were all rule followers. They did exactly what their doctors told them to do on the schedule their doctors told them to follow) at 15 months or 18 months and the next day, or two days later, or five days later, or six days later, or nine days later, their baby was banging his head against the side of the crib, no longer speaking or making eye contact, having diaper blow-outs with yellow sulfurous diarrhea.
All of a sudden their baby was gone.
But when they asked their doctors if there could be a connection between the visit to the pediatrician’s office and their baby’s otherwise inexplicable illness, instead of saying, “I don’t know,” or “Let’s investigate that,” their doctors got angry and defensive and said adamantly and with absolute certainty, “No.”
The numbers of children with autism are staggering: At least one percent of the children in the U.S. between the ages of 3 and 17 have an autism spectrum disorder.
This is a nationwide health epidemic that deserves our highest priority.
Austism is my problem.
Autism is your problem.
We need to figure out what is causing autism and stop it. We need to help the children who have been severely damaged and who cannot function get better. For those who cannot recover, we need a viable plan for how to care for them and ensure they have a safe future.
This is not a burden families can shoulder alone. It’s too much to ask of anyone. Everyone in America is now affected by autism. This is our nation’s collective problem.
We need to start asking the right questions. We need to find the answers. And we need them right now.
It’s time to stop damaging our children’s brains.
Jennifer Margulis, Ph.D., is a senior fellow at the Schuster Institute for Investigative Journalism at Brandeis University. Her writing has been published in the New York Times, the Washington Post, and on the cover of Smithsonian Magazine. A former Fulbright award recipient, she is the author of “The Business of Baby” (Scribner 2013).