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The War on PDD-NOS, Pervasive Denial Disorder-Not Otherwise Specified

Cleopatra mercury 
By Lisa Joyce Goes

 "Imagine you are seated at a table among several people. Right beside you, your child is choking helplessly. You are frantic, doing everything in your power to save him. The clock is ticking. He is turning blue and the life is draining out of him. Some of the folks at your table tell you to calm down. Take it a day at a time. The rest? They just look away."

 My goal with this facebook post was to shine a light on the intentional neglect our nation’s thought leaders have bestowed upon the sickest generation of children in American history.  Just a few sentences reflecting the angst I feel as a mom, watching my little boy languish in a malfunctioning body that offers little reprieve from the environmental grenades repeatedly hurled at his brain and gut.  A few sentences illustrating the absolute powerlessness I feel as an American citizen, bearing witness to more and more seemingly "normal" kids, suddenly and inexplicably afflicted with life altering illnesses.

 Ginger Taylor and Autism Mothers picked it up and the comment threads that followed confirmed that I am not alone.  It doesn't surprise me that many instant and lasting friendships occur during wartime.  Like soldiers and veterans, when autism moms tell the truth, we are told we are crazy. It's okay, we're used to it. We stand side by side on a daily basis, actively engaged in a battle against a heinous mental disorder known as PDD-NOS, Pervasive Denial Disorder-Not Otherwise Specified.  It’s a horrid, positively viral affliction that ravages the otherwise sentient minds of those occupying  positions of power in our educational systems, our medical, pharmaceutical, legal, and judicial communities, as well as our congressional seats. It's even affected some people in my very own neighborhood.  On the battle field (a.k.a. our daily lives) autism moms have learned that the medical facts about our children’s conditions are meaningless to those in the mainstream community who have the power to help them.  A rudimentary delving into autism history reveals that these folks have a vested interest in keeping our children's medical problems under wraps.  That's why they embargo data on their clandestine meetings,  relocate scientists, and seal vaccine court decisions.  Sadly, our contemporary thought leaders have the very worst cases of PDD-NOS I have ever documented.  Thankfully, my friends and I are here to help them and the american citizenry they've grossly misinformed. We have developed a vaccine known as the activated-mom-with-common-sense inoculation and we are providing it for free to the American public. You don’t even have to go to your doctor or pharmacy to get it.  Just head on over to your local Starbucks, the library, the grocery store, or your kid’s school. Perhaps just venture a knock on your neighbor’s door.  Too much work? Launch a search on Google and I guarantee one of us will respond.  Anywhere, anytime, an autism mom is on the front lines, ready to tell you the truth about the chronic health care problems affecting our children and the truth behind the PDD-NOS epidemic.

Since embarking on this journey of autism “awareness” nearly two years ago I've seen families disintegrate right before my eyes--siblings gaining access to drugs and porn because their mom and dad are too busy to raise them. Besides they are neurotypical anyway, they have no real problems.  Parents turn on each other, pointing the finger of blame.  "Well, it's certainly not from our side of the family." Grandparents walk away from their grandkids, saying things like, "Hon, I'd like to help you but she doesn't talk. What am I supposed to do with her?"  Neighbors exchange words over treating their lawns with pesticide-laden fertilizers. "It's my lawn and I want it to be green. Sorry your kid has issues but it's not my problem."  At Target, an autism mom (who I'm not sure knows she's an autism mom), stands in disbelief as her son backhands his sister and falls to the ground. His cheeks and neck are covered with eczema. She screams at him, pinches his arm and shoves a juice box and a pack of goldfish she has not yet paid for, in his swollen face. He tears into them and she knows for those 2 minutes he will stop (never mind what happens post-opiate) and maybe she will get to check out with her cart full of food made of aluminum, Styrofoam and mercury.  The kids waiting for the bus on the corner compare notes, "What asthma meds are you on?" "Oh, can I see your insulin test strips? Cool!"  My friends with kids aging out of their educational systems have no resources for their adult children.  They watch helplessly as their kids descend swiftly into depression.  No structure, no purpose, no friends.  Their anxiety builds. Where do they go from here?  Is this the year they'll start  him on anti-psychotics? He’s almost 250 lbs. Bus drivers sit silent (they are busy texting) while their aids abuse their voiceless riders. Another little boy with autism wanders away from home and is presumed dead.  No one cares.  Our children are turning blue. Our families, our communities, all of us are choking. No one cares.  All classic examples of PDD-NOS at the societal level.

 "Is Lisa Joyce Goes happy?"     

 his was the question posted on my FB wall Saturday morning.  It's one of those goofy quizzes your friends send you. In response, I posted this: 

 "I am determined to fix the problems that have caused the unexplained chronic illness of our nation's children; determined to hold those responsible accountable for their malfeasance.  Determined for such a cause equals happy.  I do miss my old life from time to time but I wouldn't even know what to do with it if I had it back." 

 I just wanted to answer the question. Nothing is ever finished or clean or straightforward since autism entered my life, so anytime I can address something and be done with it, I feel better. I continued about my morning, memorizing doctors, dates, and statistics from the book, Vaccine Epidemic, trying to make use of the hour I had before our three children woke up.  My greatest fear in life has become being ill-prepared to speak about what has happened to my family, should an opportune moment to inoculate against PDD-NOS arise. It's many sufferers need to see we are thoughtful and informed, not fly by night whackos that follow a pretty blonde woman around like lapdogs.  A "1" popped up and let me know someone had commented on my post.  It was my husband, Dave.  

Regarding our "old" life, he'd typed, "vacations, the park, the store, birthday parties, picnics, swimming, the zoo, DOWNTOWN, Sox games, ND games, Ireland, Paris, walks, out to eat as a family, no blood tests, no poop tests, no toxicology tests, no locks on anything that opens so your son doesn't wander into the street, lake, woods, train tracks and NO CONSTANT FB UPDATES ON AUTISM. There's just a few things to jog your memory of that old life I remember very well and know exactly what I'd do with it if we had it back!" As if that wasn't enough in another post he added, "mass, too...remember going to mass?" 

I was up in our bedroom with my computer, books, and abstracts of studies that have not left my side for two years.  He was eating breakfast at the kitchen table. We used to eat breakfast together.  He was absolutely right. We had a great life. Why did I ever question any of it?   Everything was so good and while I was always grateful I don't think I savored it thoroughly. We had such carefree times.  Paris on Valentine's Day.  Saturdays with our baby daughter in Philly.  My brother-in-law Tom turns 40 next year and our whole family is planning a trip to Ireland to celebrate.  We won't be going.  We will be flying back and forth from California and Texas, getting Noah treatment for his many medical illnesses.  Our good life vanished overnight and an obsessed manic mother of three replaced a traveling, live and let live, "cool" mom. Our dreams for our family have truly become a distant memory to me, but clearly for Dave, they still lurk just beneath the surface.  I emerged from our room gave him a hug, had a good cry, and said I was sorry.  We did have a life before autism and it meant something.  It was ours and I didn't mean to be flippant or dismissive. I mourned our loss with him for a moment. Then I marched right back upstairs and finished studying. That life is gone and this is our new one.  Period. War is a bitch.  You can remember what was but you absolutely cannot stay there for any length of time.  You might end up daydreaming and step on a land mine. Kids are sick.  Kids are dying. Eh, it happens.  More PDD-NOS.  It’s everywhere!  Find your local autism mom and get inoculated with knowledge today.

I recently had the good fortune of interviewing the brilliant women of AIM, the Autism is Medical meetup, HERE.

 Jeanna Reed, Jill Rubolino, and Mandee Lochbaum.  They have been instrumental in getting research in my hands that may help Noah. All three of their children are well on their way to recovery.  After Mads played for three hours with Jeanna's son, I told her he had autism.  She responded, "He does NOT?!"   I said, "Well, not anymore, Ms. Jeanna fought for the right medical care and now he's better."   She told me I needed to get on it and listen to what Ms. Jeanna had to say.  During a conference call meant to last an hour that stretched out for four, these warrior moms told me of a conversation they'd had with the Good Doctor, two years before he was stripped of his license.   He predicted his own demise.  He knew Merck had targeted him and he was going down.  It was inevitable. That was okay, he'd accepted it.  It didn't mean he was going to stop fighting.  No, he was in it for the long haul, and he would be around long after this miscarriage of justice no matter what the GMC did to him. His next assertion gave me chills.  He told them, "It's not up to me anymore. I've done all I can.  It's about you now, the moms.  The moms are going to change this.  Those in power underestimate you. They have no idea what lengths parents will go to protect their children."  

He was right. It's happening.  NOW. 

A great asset for our camp is the fact that those suffering with PDD-NOS are afflicted with grandiose egos, bigger than any autism mom could ever fathom.  Ego is no longer an issue for us. We stopped putting ourselves first the moment those sweet babies entered our lives.  We started fighting like warriors for them when their minds were snatched away from us by smiling pawns in white coats.  Soldiers like Ginger Taylor, Autism Mothers, the AIM founders, Autism One volunteers, TACA warriors, and my FB friends live in every neighborhood in America.  We've made it our mission to inoculate every sufferer of  PDD-NOS against the unacceptable and incomplete science our government presents as flawless and unquestionable. We are exposing their misleading and propagandized data, for what it is, a perfectly executed pharmaceutical marketing campaign that has been fed by well paid lobbyists for nearly a century.  The good news is, people are starting to get it.  The recovery from PDD-NOS is a long and painful process but it's well worth it. Our friends and neighbors who previously thought we were a tad loony now come to us the minute their child/nephew/best friend's kid starts acting "weird" and gets chronically sick.  We give them viable, helpful resources. We tell them of the groundswell of intellectuals, respected doctors and scientists in our movement and the hope we hold in our hearts as a result of their hard work.  Because of the aforementioned removal of ego, arrogance and judgement (two of the most hideous symptoms of PDD-NOS) are not qualities we possess.  

Concerned parents who come to us for information know that we spend hours and hours combing through data the government and our doctors are too busy to bother reading.  It seems to me that our humble legions are growing at a rapid pace.  Our financial resources may be few but our intellectual stamina and our love for our children is limitless. Our  need to do right by them gives us endless stores of energy. Unlike those fighting to keep PDD-NOS alive and well, we have nothing to lose.  They have already robbed us of all we ever wanted, healthy children.  They have assets, things, stuff and accounts to hide and protect. Things still matter to them. We've already spent our kids college money on treatment. We'd readily accept life in a mobile home park centered in tornado alley if the trade off was a month of free hyperbarics and biomed. We will fight for justice and treatment for our children until the day our last breath evacuates our tired and war torn bodies.  We will vindicate our fallen comrades, too. The casualties of war I spoke of earlier, the overwhelmed parents, forgotten siblings, the undiagnosed 8 year olds whose parents are still in denial, and so, so many more.  Someday very soon, I believe, we will make great advances in the war on PDD-NOS.  No matter how much money and power they have, they cannot suppress the truth when the denial of its existence is their only strategy. 

Lisa Joyce Goes is the mom of three and Managing Partner of The Misuta Project, L.L.C., an autism media company in search of the truth, in support of those pursuing it.  

 

Comments

Renea Hanover

Any PDD-NOS mom can relate to all you've said. We live this on a daily basis, not to mention dealing with siblings and marriages above and beyond our affected children. All I can say is fight...fight ...fight. I did. 3 schools...insurance companies...etc. I finally feel like we are in a better place now because of it. My child is med free and eating the same diet as the rest of the family. He attends a private school for children with disabilities and is doing well. Maturity has helped also. After many years of "battle" I feel hopeful! Now if they only pinpoint and prevent what is causing this in the first place.

lj goes

Grannyblue--you broke my heart! What an amazing grandmom you are. Please friend me on Facebook. I would like to learn more about your experience. Thank you for your kind words and keep up the good fight! Blessings my friend! lisa joyce goes

W. Edwards

You said it all perfectly. I am thankful that you are battling with the rest of us. God Bless.

Gina Radakovich Vokoun

LISA - YOU ROCK! As usual. This Warrior Mom has got your back and the rest of the population who is still in denial. Speak the truth, help a child. God Bless my friend!

And tell that husband of yours, we love him too. ;o)

Benedetta

For a quarter of a century all the professionals around be have been trying to decide what my son is;
He is PDD-NOS, or tourettes, or epileptic, or aspergers.
These dignosises changed regularly around here.

But my son behaved exactly like MacNeil's grandson.

Do you think this confussion is on purpose? Or we just really have confused professionals?

MacNeil be careful of that little daughter - I thought mine was okay - very smart, articulate - although she did nto pronouce the ch sound right in the first grade, and she was mad a lot. Depressed as a teenager although she was the valdictorian of her class????? She has bipolar. Scary stuff when you already have one you know is struggleing and the other can voice it's own thoughts and feelings so well.

Donna Pleshe

brilliantly written article. It describes exactly what my daughter and son-in-law have been going through.

Grannyblue

OMG, Lisa. We, Papaw and me, are the odd-ball grandparents in a totally upsidedown famiy situation, a destroyed family, heartbreaking to us, but a family grasped by that PDD-NOS, and we, the two of us, are the "autism mom." We are so clobbered, and yet we go on for him, the college student with a chosen career ahead of him, taken away and put in a little cinder-block house in a small town. Oh, well. He has autism. Lisa, thank you for this. It helps.

Barry Smeltzer

Lj- You took a down time for me today and kicked my butt! Renewed my strength and commitment even more!

owntruth

Wow! Lisa this is an amazing article. Thank you!

LainnaLynn

I could barely read the end through the tears.
AMAZING piece. I don't have the words to properly commend you.
Thank you.

Caffeinated Autism Mom

Very powerful post! I have 2 boys with PDD-NOS and I completely understand *everything* you said. I've lived it, too. Thank you for sharing this with us.

-Angela (aka Caffeinated Autism Mom)
http://caffeinatedautismmom.blogspot.com

Jon Montgomery

Great article LJ. You are are on every battlefield.

Taximom

Brilliant article, beautifully written! Thank you so much, Lisa!

Art Carrison

Well done LJ. You are an impressive Mom!!!

Lisa @ TACA

Wonderful article. Thanks for writing it Lisa.

The last 12 years watching grass grow is light speed in comparison of caring about hundreds of thousands of sick kids. The past 12 years have been a nightmare.

Stagmom for Dave Goes

Most romantic wonderful comment ever to grace AofA. (Pass me a tissue.) K

Dave Goes

Regardless of how much I miss our old life, the one we live now is more important than ANY life we had before. And there is no one I'd rather have on the front line standing beside me. Thanks for all you, do LJ. Your Hub.

Carol

"ANOTHER MAJOR threat to the pursuit of evidence-based medicine is that of poor data packaged as high-quality evidence. Drug manufacturers tend to be the sponsors of the largest and most expensive randomized clinical trials. As such, they are the gatekeepers of a significant percentage of the gold-standard medical evidence used to determine the best treatments.

Yet troubling examples have surfaced of companies keeping 'adverse events' data — such as painful side effects — hidden, or of publishing only studies that are positive for a drug, while burying the negative results. For example, researchers from the University of California San Francisco looked at the raw clinical-trial data submitted by drug companies to the Food and Drug Administration for all new drugs approved in 2001 and 2002 and compared it with the papers that were later presented to medical journals. There were some distressing discrepancies. Almost half of the negative outcomes found in data submitted to the FDA were excluded from the published papers. The statistical significance of some results was reinterpreted between what was submitted to the FDA and what was published, and several conclusions were changed in the published papers to favor the drug."

http://www.boston.com/bostonglobe/editorial_opinion/oped/articles/2011/04/17/trial_and_too_many_errors/?page=full

CHRISTIE

YES! I see this a lot in other kids. At age 11 still poop in their pants, steal anything, out of control....until mom pops an ritalin in his mouth. She then gives him his KoolAid and Twinkies and feels sorry for herslef bc her child has probs. It's because he doesn't have a FATHER! REALLY??? REALLY???? There are moms out there that REFUSE to listen, refuse to research, refuse to try. I thank GOD for people on the forefront helping moms that are warriors. Thank you for education, the internet, and until I realized my son had Aspergers, I did not know ND's even existed. A good natural dr can guide your journey! I now have a wonderful social, smart son! I will help any mom reach their childs potential in natural healing out there. IT can work and we are living proof! Facebook me Christie Gravatt Ms.

Thoma Mittower

As Grandfather of a 7 year old that I have the opportuinty to interact with on a daily basis I find it very disheartening that there are parents and other relatives out there that just throw their hands up and walk away. Equine Therapy has helped her in so many ways. See what I'm doing at Mittower Stables on Facebook.com.

threenorns

i get that a lot - "what do you mean, your kids don't have problems, look at them: one is a rising music star, the next is a junior partner in a paralegal firm, and the third is just precious and SO smart! stop looking for problems - you read too much".

because, you know, NO mom wants their kids to be "normal" and have ridiculous things like friends and sleepovers and a happy school experience and normal grades (instead of A+ flanked Fs) and birthday parties to which kids actually show up and such. THAT'S just foolish!

society and the education/medical/government sectors seem to think that so long as the kid can hold a job and go out in public without their underpants on their head, they've done their job and to demand anything more is being greedy and unrealistic.

Vicki Hill

Thank you. As the mom of a 23 yo, I would just add to not settle for the medical establishment's "Don't worry; we will have this figured out in 5 more years." I was told that FIFTEEN years ago. The progress in those 15 years has been shockingly slow. When you are a medical researcher, you have a lifetime career in which to do research. When you are a parent, you have only a short window of time in which to raise your child.

Sylvia

WOW!!!!!!!!!!! What a fantastic thing to wake up to on dreary monday. Thank you Lisa for some of the best words on the subject I have come across in ages!

"War is a bitch. You can remember what was but you absolutely cannot stay there for any length of time. You might end up daydreaming and step on a land mine."

BRILLIANT analogy!

Donna L.

Thank you, Lisa, and all the others out there who, for the sake of all children, are not giving up and are not shutting up.

“In a battle all you need to make you fight is a little hot blood and the knowledge that it's more dangerous to lose than to win.” - George Bernard Shaw

MelissaD

All I can say is fantastic post! It just makes me so sad and angry that our children are considered "collateral" damage and so many people in this country don't give a damn... Thank goodness so many of their families DO give a damn and will fight for them. Here's to the good fight!

Teresa Conrick

Thank you, Lisa. We are making progress on the front and for those who have been at it, like myself with a very ill and affected child now 15 years in the autism trenches, reading this feels great!

The TRUTH is on our side and those who oppose it are the enemies of innocent children.

We will never give up.

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