Autism Is My Problem: Report From AutismOne

autism_one_2013

“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).

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Categories: autism.

Comments

  1. You cannot possibly know what it means to have a parent like you, (no child on the spectrum, highly educated, thinking) firmly in the corner of our children. I had a lump in my throat reading this. Thank you Jennifer.
    Michelle O’Neil recently posted…Grisly AdamsMy Profile

  2. Very well written. When I was having my children, autism was almost unheard of, 1/10,000. My wise physician (before lawsuits) stated that he did not do ultrasound because “we should not subject an entire generation to a test we do not know the long term outcome.” I am doing a survey to see if I can find a link. I need more mothers to take this so we can get credible numbers to get regulation of Ultrasound in pregnancy. So far out of 555 pregnancies who reported getting ultrasound, 15 children diagnosed with autism. Out of 198 who did not, NO autism. Please help me by having everyone you know take my survey at preventbirthdefects.com. It may also be linked to the increase in cardiac and urinary tract defects as we know where they point this equipment. Thank you for all that you do. God bless.

  3. nicolette @ momnivore's dilemma

    Thank you for standing up for our community.

    As a mama to 2, one with ASD and one with mild DD, I’ve spent the past three years at Autism One. The truth is in the margins.

    My best,
    Nicolette

  4. Thanks for attending this conference and reporting on it. My nephew has Down’s, autism, and is bi-polar. I watched his parents struggle, thinking for years that his behavior was due to Down’s. It took a stay in a specialized center to get the full diagnosis. The autism epidemic is heartbreaking. When I read the stats, I want to cry.

    • mary

      I have one question for all you out there that they vaccinated their children…if you think vaccines are working and they protect your children, why you worry so much about the parents they don’t vaccinate their children, at the end if something happens each. One will support the consequences of their choices..why you guys are soo worried???

      • Crystal

        Vaccinations are a community issue. they don’t work 100%. if my child is one of the children that is DOESN’T work on and yours is, if you DON’T vaccinate, your child could expose my child even if vaccinated. that’s why. (hard to type w/ sleeping 2 y.o. on me).

        (my 12 yo has aspergers)

  5. Bonnie peters

    Well said! As I started to read this it sounded like my daughters journey with my grandsons! She KNEW and the doctor made her feel like a neurotic mom!

  6. While I do believe that there are some cases of vaccine induced autism, I believe the majority of cases are caused by environmental toxins that the parents and even grandparents have been exposed to such as gmos, processed foods, polluted water, heavy metals, pharmaceutical drug use, etc. the exposure to these environmental toxins causes changes in gene expression and as a result we are seeing an explosion in the number of children with asthma, allergies, asd, etc.

  7. KFuller

    I am crying as I read this. I will have to read it again later. We heard the word Autism 17 long years ago and it sickens me that parents are still hearing it today. Thank you for joining us with your very strong voice.

  8. Mary Cavanaugh

    Thanks Jennifer for being brave enough to write the TRUTH. What traditional medicine is doing is criminal!

  9. Christine

    I love that you are a champion for these parents. We all need to hear the things you are telling us! I know it’s been paradigm shifting for me. Thank you.

  10. Ana Maria Abba

    Thank you soo much for this blog. I wish more “mainstream” people would just get that isn’t just my problem.. it does affect ALL of us.

    Thanks from the bottom of my heart.

  11. Heather

    Not just vaccinations, which I’m against – people need to look at the GMOs they are feeding themselves and their children. Some children diagnosed with autism recover once they are put on an organic, GMO-free, and for some gluten-free diet. Research vaccination safety, ultrasound safety, and GMOs which are never safe. Great article!

  12. Meg

    This is such a great piece – thank you for taking the time to write this. Its all so messed up and crazy, I often think I am dreaming (or nightmare’ing!!). The number of affected children and families is staggering, and so many more will also suffer needlessly as we continue to turn a blind eye on the poisoning of our kids.

  13. What can we do? WHAT CAN WE DO? We’re poisoning our kids, we’re poisoning our land, we’re poisoning our air. I feel so stinking powerless sometimes. And a bit like I’ve been sucked into a dystopian novel from my teen years. I do see the tide turning a bit, with people standing up for our rights to safe food and better health care. But it’s SO slow.

    I’m glad that you’re talking about this.
    Kris @ Attainable Sustainable recently posted…Grow: Swiss ChardMy Profile

    • Kris, there is a lot we CAN do about this. You are already doing so much with your website and the way you educate people about healthy eating and a gentler way to treat the planet. Here goes:

      1) Education: We can educate ourselves about what families with autism are going through. I just finished reading ALL I CAN HANDLE: I’M NO MOTHER THERESA written by a mom whose three daughters are all on the spectrum. I am buying more copies to give to friends and family. Andrew Solomon has a very good chapter on autism in his book FAR FROM THE TREE. I write about autism in two chapters of my book as well (the chapter on prenatal ultrasounds and the chapter on vaccines.)

      2) Reaching out to families whose children are on the spectrum: We can reach out to families whose children are not neurotypical and invite them over for dinner, have their children over for an afternoon. Please read this interview with a writer mom whose daughter is on the spectrum: http://www.jennifermargulis.net/blog/2012/08/have-you-ever-invited-an-autistic-child-to-a-birthday-party-or-to-go-trick-or-treating/

      3) Stop judging other moms: Instead of judging and sighing when someone has a child acting out in public, we can help them, keep their other children safe while they handle the one who is acting out, say something kind, and BE WITH THEM not against them. Then scribble our number on a piece of paper and say, I’d love to have your family over for a play date.

      4) Insist our government put more money into autism research: At AutismOne the homework was to meet your Congressmen in their district office face to face. I’ve never done this. I plan to. When I meet with them I am going to say that I want the autism epidemic to be given more consideration. If ONE PERCENT OF AMERICAN CHILDREN HAD THE MEASLES THERE WOULD BE BILLIONS OF DOLLARS GIVEN INSTANTLY AND THE NEWSPAPERS WOULD BE TALKING ABOUT NOTHING ELSE. And measles is not a fraction as concerning or expensive or devastating as autism.
      Jennifer Margulis recently posted…Cooking With Kids: How Your 3-Year-Old Can Help In The KitchenMy Profile

    • Kris, and read the brand new book THE THINKING MOMS’ REVOLUTION, which gives a glimpse into the lives of 23 moms and 1 dad whose children are autistic. It’s a raw, brave, vulnerable, wonderful book!

  14. Shelly

    Thank you so much for giving us a voice! I sure hope someone listens! It is criminal what they are doing to our babies, it makes me sick. Hard to believe it could happen in a civilized society. Even harder to get people to wake up.

  15. Tionna N

    Amazing!!! I too was at AutismOne and it is so good to finally see and hear that there are people (besides parents) who finally get it! This is a problem and we have got to fix it!!!!

  16. So refreshing to see a journalist writing the truth and not propaganda
    I trained in pediatrics and rehab medicine. It became increasingly obvious to me vaccines were damaging some patients.
    I was taught “mothers know best, listen carefully to them”
    It seems this pediatrician’s credo is being ignored when it comes to vaccination because it would turn the physician’s world upside down and they’d have to actually think for themselves, something most doctors aren’t wiling to do.
    I applaud the Thinking Mother’s Revolution
    keep it up, for without you, there is no hope for change

  17. Anca

    Thank you very much for writing this article , when so many people are neglecting it. I have a question for all those parents out there who believe that vaccine are working how the Pharmaceutical companies are saying, if the vaccines work then you shouldn’t be worried about the children they aren’t vaccinated , because your being vaccinated is ” protected”…let the other parents raise questions if the vaccine works…do they work? Then my question is why you bully the parents they don’t agree with you????

  18. Juan Ellingboe

    Well said, I used to feel that most of the people ignores this problem of disability, mostly don’t even know the problem.
    Juan Ellingboe recently posted…yes biżuteriaMy Profile

  19. Laurie

    I’m not sure why, but it really feels so empowering when someone who does not have a child with autism writes so passionately about what those of us who do have children with autism struggle with. Bravo, Jennifer.

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