Blaze’s Excellent CDC Adventure: Part 1

Hey!  Blaze here.  I’m an autism mom.  Before that?  A silly party girl with only the next get-together of like-minded good-for-a-laugh tomfooleries on the calendar (usually those were on all days that end in “y”). But something changed in me when my oldest child got sick.  Life got a WHOLE lot more serious and what I do in this life got a whole lot more important.  Something MORE changed in me when I figured out that what was going on with my son could have possibly been prevented.  The last branch of the vapid tree snapped when I discovered that I was on my own to figure out how to help him…because our government and medical system were failing us.  I jumped into action to figure out how to help him and the last 8 years have been the most crazy, stressful, upsetting and also rewarding years of my life.  My son is doing great, but I decided years ago that autism or no autism, for the rest of my life, whenever I have the chance I will be as loud as I can on the subject of my son and children like him (how about a Revolution?).  And that little promise, my friends, is how this mom ended up at a podium in front of 150 doctors and professionals at the CDC.  We can call it Blaze’s Excellent CDC Adventure.

Almost exactly one year ago, I drove the 4 hours to Atlanta to a meeting called a “Workshop on U.S. Data to Evaluate Changes in the Prevalence of the Autism Spectrum Disorders (ASDs)” at the CDC. (who knows when you will read this, it was 2/1/11)

It was sponsored by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC) and Autism Speaks.  In attendance for the panel were the likes of Geri Dawson and Peter Bell from Autism Speaks, Alison Singer of the Autism Science Foundation, Mark Blaxill, author of Age of Autism, Dr. Krista Crider, a geneticist with the CDC, Dr. Jane Charles, Developmental Pediatrician at MUSC, Prisca Chen Marvin, former Chairman of NAAR (National Alliance for Autism Research), Dr. Lisa Croen, director of Kaiser Permanente Autism Research Program, Roy Richard Grinker, professor of Anthropology at George Washington University, Dr. William McMahon, Chairman of the Psychiatry Dept. at University of Utah, and many other touted experts in psychiatry, epidemiology, and psychiatric epidemiology.  Oh, and let’s not forget Wolf Dunaway.  A federal employee who has a diagnosis of autism.  We’ll get to him later.

I felt compelled to attend and also to speak during the time allotted for “Open Comment”.

The first half of the day was filled with speakers from the CDC giving their take on autism prevalence.  They still are using the 1 in 110 number, a count of 8 year olds in the year 2000.  Yes.  Eleven years ago. This is the last time the CDC tried to figure out how many American children are affected (although rumor has it that we might be getting some new numbers in April in honor of Awareness Month).  Even though the name of the meeting was “Workshop on U.S. Data to Evaluate Changes in the Prevalence of the Autism Spectrum Disorders (ASDs)”, there was no new information since the year 2000 (again, this is written is 2012).  Such subjects were discussed as: What might be influencing temporal patterns in prevalence?  What do we know about genes that are involved?  What do parental age, economic and education status of the parents have to do with autism prevalence?  What other risk factors might be involved?  What does US Dept. of Education think about all this?  What can we learn from the analytic methodologies used in cancer, asthma, or schizophrenia?  The answers to those questions???…We don’t know!!!, not a whole lot!!!, probably nothing!!!, who knows!?!. To say it was enlightening…well, it was…but not in a good way.  When it came time, half way through the day, for the public comment section, I was agitated, and my other autism mom friends who came to speak were as well.  No urgency, no new answers, none of the desperation that we as Thinking Moms are feeling.

When it came my time to stand in front of this cast of characters that are “experts” in autism, this is what I said:

“Hello.  I am the mother of a 10-year-old son diagnosed with autism, encephalopathy, and heavy metal toxicity.  I also work as a Patient and Family Advocate for Autism Spectrum Disorders for a South Georgia pediatrician.

What drove me to come here today is this:  My son was diagnosed with autism over 7 years ago.  And it is the same at the pediatrician’s office for a family who gets a diagnosis today as it was when my son was diagnosed way back then.  Pediatricians send you to Speech and Occupational Therapy…and that’s IT.  And THAT is UNACCEPTABLE.  (This is when I looked up, 10 feet away from, and right into the eyes of, Geri Dawson, head of science at Autism Speaks).

That being said, I would like to share what I have seen and learned over the years.

On the subject of prevalence, I would like to point out that in the last 10-15 years in my small town, all you would have to do is take a look at the Autism therapists and specialists hired within our school system, the special autism classrooms created, and the fact that a pediatrician felt the need to hire an advocate for ASD patients to believe in a real and terrifying increase.  I wonder if a pediatrician has EVER hired an advocate for any special need or disease, like measles?  I can’t say I’ve ever heard of that. (This is when I looked up to see Alison Singer turned away from me, legs crossed toward the back of the room while she played around with her phone).

In the last 3 years I have taken patient/family history on 300 families.

On the subject of what I see in my office, I’d like to say that the studies you have referred to today do not apply to my patients.  A running theme of older fathers, more educated parents, or children born less than a year after their older siblings is NOT what I see.  But here is what I DO see in our patients:

1)  Military children vaccinated (the word vaccine or any derivative of, was never murmured in this meeting until the mothers stood to speak at public comment) repeatedly because their records do not follow them fast enough

2)  Premies and sick newborns being vaccinated

3)  And the biggest running theme:  family histories of autoimmune and bipolar diseases.

Which begs the point that vaccine court is paying for those with “health issues” and “autism”.  Maybe these children I work with (and my son) are in that group of sick kids with “autism like symptoms” and really do not have “autism” at all.  But regardless of labels…

On the subject of my son…

Most vaccines are contraindicated for those with immune system issues.  So I would like to point out that it is irresponsible to jump into vaccination with newborn babies when the status of the immune system and mitochondrial function are unknown.  My son’s grandmothers both have lupus.  One grandmother also has a seizure disorder and was recently given the shingles vaccine with neurological damage as a result.  My sister spent a week in the hospital after MMR at age 7.  If our son’s first pediatrician had taken into account our family history and held off vaccinating until the status of my son’s immune system were more clear, then I  believe 100% that I would not have been dealing with autism all of these years.

In conclusion, I suggest:

A sticker on the outside of the pediatrician charts denoting an autoimmune family history so that full vaccination does not occur.  I believe this would alleviate the incidence of the sick children coming into my office.

I’d also like to make the point that those who claim their children/patients have been harmed by vaccines are also the ones TREATING those children for vaccine-injury, in large part with much success and sometimes even full recovery from autism.  This phenomenon deserves your attention.

Until studies are done to determine the safety of 5 vaccines in one day for a 2 month old…or comparing the autism rates of vaccinated vs. non-vaccinated children, then there will be thousands upon thousands of autism families who believe vaccines have something to do with their child’s autism.  Thank you.”

Now we can quibble all day about whether you agree with what I said…I had 3 minutes and at the time this is exactly what I wanted to say.  I’ll share what happened during the rest of the day tomorrow…but for now…I want to know, what would you say if you had 3 minutes in front of the CDC and Autism Speaks?

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39 Responses to Blaze’s Excellent CDC Adventure: Part 1

  1. Pingback: Lioness Arising Mom #6: Kim Spencer | Gianelloni Family

  2. Kerri Rivera says:

    You did an amazing job. Thank you for representing me and many others of us who will never have our voices heard. I would probably not have been so eloquent. I would probably go nuts. I know, it wouldnt help. But, this makes me feel sometimes like I am coming out of my skin. Why cant we just keep track of 100 vaccinated kids and 100 non vaccinated kids from birth to 3. I am sure that we could see what is going on.

  3. Pingback: March 18, 2012: Blaze on Linderman Unleashed | The Thinking Moms' Revolution Starts Here

  4. Pingback: March 2012: Blaze at CDC Part 1 | The Thinking Moms' Revolution Starts Here

  5. Jim says:

    Blaze, Thanks so much for standing up to these people. Autism Speaks and the CDC are not on our side. They have their own agenda, protect the big pharmaceutical companies profits and blame the victims. The day will come when all of this will be seen as crimes against humanity.As for Ms.Singer playing on her phone, that just goes to show the arrogance and contempt these punks have for the autism families. Good Luck and God Bless You!

  6. Jim says:

    Blaze, Thanks so much for standing up to these people. Autism Speaks and the CDC are not on our side. They have their own agenda, protect the big pharmaceutical companies profits and blame the victims. The day will come when all of this will be seen as crimes against humanity.As for Ms.Singer playing on her phone, that just goes to show the arrogance and contempt these punks have the autism families. Good Luck and God Bless You!

  7. Happy says:

    I’m no speech maker but I’d say you did a great job. Thanks for standing up, I for one appreciate it!

    • Blaze says:

      Thank you, Happy. The opportunity just fell into my lap and I went for it. We have to do what we can, when we can, with what we have in us. I wasn’t like this always!!!! LOL

  8. taramcmillan says:

    I would just say- “Duh!”- “if it happens after vaccination- then Thats why- and something needs to be done- by someone with NO ties to Pharma

  9. Brandy Hoyle says:

    You write beautifully! I love this! I also read your blog “I know why the caged Bird sings!” Im worried my son may have some vitamin or health deficiencies too, but who do I see to test this? Our local pediatrician only wants to medicate, same as his teacher, they dont seem to care to investigate what the cause may be!

  10. Allie says:

    First of all, Blaze, you ROCK! Be forewarned – I totally took your 3 minute challenge.

    I think I would HAVE to start with a question – something like, “Dear panel of mighty experts, this workshop is supposed to ‘Evaluate Changes in the Prevalence of the Autism Spectrum Disorders (ASDs).’ How can we possible do this with ANY degree of accuracy in 2011, using data from ELEVEN years ago??”
    Eleven years ago, I knew very little about Autism, and didn’t know anyone affected by it personally. Now, I can’t go to the grocery store, much less down the hall at either of my children’s schools, without seeing a child with some form of ASD. I would say that the PREVALENCE – that is, the percentage of the population of children in the U.S. affected by Autism – has increased greatly, dramatically, ALARMINGLY in the last eleven years. But it’s probably hard to see that, using data that is OVER A DECADE old.

    Second question (pay attention, Autism Speaks) – “Exactly how much money, time, and effort need to be wasted on the hunt for the (thus far) nonexistent Autism gene, before everyone agrees to REALLY look elsewhere for a cause??”
    How many more studies must we have to sift through (while collectively sighing at the immense WASTE of money and resources), identifying older parents or mothers with larger-than-average breasts as potential causes of Autism? How much longer do we have to watch the CDC, Autism Speaks, and the researchers they employ turn a blind eye toward ANYTHING pharma related as a possible cause? All the while, wasting funds and precious time our kids don’t have, looking for a way to pin the Autism epidemic on the parents?? I’m not saying that genetics are not a factor – just that they aren’t the ONLY factor.

    Which brings me to my last point…Please explain to me why, with the tiniest and most vulnerable members of society (newborn babies) we ask NO QUESTIONS before administering one-size-fits-all medicine (vaccines)?? Big babies, small babies, pre-term babies, babies born via C-section, babies born to drug-addicted mothers, babies born to mothers with a seizure disorder (like THIS girl), ALL babies = same vaccines. No testing of immune function, no screening for underlying mitochondrial or autoimmune disorders. Nada. Please name ONE single other area of medicine that is one size fits all?? You can’t fill a prescription at the pharmacy without getting a leaflet detailing all of the potential side effects and contraindications. Got a heart condition? Don’t take that drug. Seizure disorder? This therapy isn’t for you? But bringing your perfect two week old baby in for a well check is a whole different ball game. A quick exam, one stick in each arm and one in each leg, and MAYBE a pamphlet to read later about the vaccines your baby just received. Potential risks are downplayed, questions go unanswered, concerns are laughed off, even though vaccines have NEVER been properly tested for safety in the manner in which they are administered (multiple shots, combo vaccines, etc).

    Don’t you think it is time to take a good, hard, totally unbiased look at vaccines and their safety? Time to find some method of screening to identify potential at-risk babies BEFORE they are vaccinated? Time to put the health and safety of our children ahead of the greed and the profits of the pharmaceutical companies? I certainly do, and I know entirely too many parents who feel exactly the same way. Thank you.

  11. joy whitcomb says:

    1. you are a F-ing rock star.
    2. What’d they say back?

    (i suspect family auto immune here triggered by vaccines)

    • Blaze says:

      No response, Joy! NONE! NOTHING. 🙁

      • Kim says:

        A) They don’t care

        B) They know, but are so busy covering their arses to protect the precious national vaccine program.

        Makes me so mad! … and what happened to the announcement made last year that the CDC was to study vaccines and regressive autism? What’s going on with that study? Did anyone start it?

  12. Kelly says:

    I really hope the rest if the day included an “oh GOD, Alison, I’m SO sorry about that hot coffee I just spilled up on your face.”
    3 minutes. I can’t imagine the editing you had to do for 3 minutes of impact. I’m proud of your clarity and maturity. There are 2 sides, and the one you focused on was the scientific, the factual, which works in those situations. Then there is the soul of a child, forever altered – I don’t think that could ever be edited. But if you can ever figure out how to give that some air time in the 3 minutes… Does anyone in the audience appreciate that they won the Russian roulette with their genetics, which is why they can do and be who they are today, and why their children may be ok… But they might not’ve? Because until we understand, who knows who is next.
    Yours is a life well-lived. Thank you.

    • Blaze says:

      I wanted to hit them where it hurts…emotions were not really appropriate I thought. It was hard. Thank you for your support. One day, you should be able to say this. I LOVE IT.
      Thank you for commenting!!! xoxo

  13. autismwars says:

    That is what I want to know too. There is SO much auto-immune dysfunction in our families. Why are they refusing to study it.

  14. Blaze says:

    I’m loving your comments! Keep them coming!!!!

  15. Ana Maria Abba says:

    I’d say shame on you for not doing your best to protect our children.

    Shame on you for allowing money and greed to run our vaccination schedules

    Shame on you for not doing more;learning more; education more

    Let us mothers, fathers and others who know what it is like to heal our children lead the way; let us educate YOU on what can work and what should be done. We have learned the hard way. We have HAD to learn the hard way. We have doctorates in medicine from doing and researching and networking with others who KNOW. We might not have the traditional MD. but we KNOW. Let us help you “help us”.

  16. KFuller says:

    I would say to Autism Speaks …Change your name, you speak for no one.
    To the CDC…You have had your chance. Time’s up. You’re fired.

  17. noahspins says:

    I would show them a picture of my precious Noah. I would go up to each and every one of them. I would grab them by the hand gently, and ask them to look me in the eye. Then I would say, “I am a mom. I know what you’ve done to my son. I know you know what causes autism. I know you know how to stop it. Stop it now. Fix this problem now. My friends and I are on to you. It’s over.”

  18. Jan Houston says:

    Fantastic Job, Blaze. I would have wanted to shoot all of them on site. I absolutely LOVE the posts here. The moms and dad articulate what I feel/experience every day. Not many people want to understand, much less deal with me when I have “meltdowns”. My son has autism, but I have meltdowns, too. Especially when dealing with the “professionals”.
    Thank you all so much for posting here. I need you.

  19. Leslie says:

    A baby that is found to be in distress within the first 48 hrs of birth and is in the NICU with an unknown reason should not be vaccinated at 48 hrs old JUST BECAUSE it’s standard procedure. AND if any baby spends ANY time in NICU AT ALL this baby should qualify to be seen by ALL Pediatric specialists immediately. NO VACCINES should be noted on all documents until further notice.

  20. Donna says:

    I can only pray that I could be as factual and eloquent as you, my friend Blaze. It’s my honor to know you and I pray for you and your family every day, just as I do for my own daughter and her beautiful family and now, all of the other Thinking Moms (and Dads)!

  21. LoRenzo's Voice says:

    I would say help me, and parents like me. I dont give a damn about the label, the the symptoms, or the cause. Right now I only care about my sons recovery. He is seven and has just now been potty trained. He has just started to speak in 4and 5 word sentences. I want ALL possible treatments available to my son. I want them to be affordable being that I am on disability and the fight with Medicaid over whether my child is actually benefitting from what little therapy they DO approve is exhausting to say the least. I would tell them that our children deserve at least a shot at independence, if not full recovery. You see, my son has a label and IR has changed from year to year. What he needs is a course of action.

  22. Sabrina Stone says:

    I would try to reason with them. I understand they believe immunizations are not the cause because immunizations do not result in autism 100% of the time. But let’s be reasonable. They are one of the triggers. The cause is more likely genetic, auto-immune, or due to virus exposure.

    Genetic predisposition….environmental trigger!

    It is irresponsible to continue to immunize children when you have not determine if they are predisposed.

    Duh…..(well, perhaps not the duh…but I would be very tempted).

    My own son was autistic from birth. He did not have full immunizations because I knew something was wrong. He was my 4th son so I saw the difference. Trigger….virus during pregnancy…Genetic predisposition…you bet (look no further back than his uncle!)

    So, I think you were very articulate and did a great job with your 3 minutes. I might have gone back and slapped the woman on the cell phone…but that’s just me.

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