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The Other 1%

1%By Jamie Pacton

We may be the 99%, but my son isn’t.

As a severely autistic 4-year old who doesn’t talk, can’t sit still, hurts himself and others, and must be trained to do everything from hugging properly to playing with toys, he lost the numbers game.  He’s the other 1%—or 1.36363% to be exact—but he is not alone. 

The CDC reports that 1 in 88 kids have autism.  That number’s up from the slightly less scary 1 in 110 kids that was reported just a few years ago.

1 in 88 is a whole lot of kids and people are talking about why this number is rising—diagnostic changes, vaccines, toxins in the environment—but I want to talk about something else—awareness in the medical community.

I know everyone’s down on docs because of the speciously debunked connection between vaccines and autism, and I’ll leave that issue in the ground for now.  What worries me more is the fact that my son is stuck in a health care ghetto between ignorance from his pediatrician, ambivalence from pediatric specialists, and incompetence from his holistic doctor.  Luckily, we live in a good state for autism services and behavioral therapy is covered by our insurance.  What worries me, however, is that the medical side of my son’s autism is mostly ignored by medical specialists.  His medical interventions are mostly left up to me, an English teacher, who once wanted to be a biologist, but who sucked at Chemistry. 

Consider some of the recent interactions my son and I have had with his doctors:

Pre-diagnosis, when he was losing words and showing early warning signs, my concerns were dismissed by a pediatrician as needless. “He’s a late talker,” she assured me. “We’ll check him again when he’s 3.”

Post-diagnosis, we arrive at a different pediatrician’s office for his 3-year-old check-up. The doctor is busy with other patients, so he shoves a Resident in to the exam room and orders us to “fill the new guy in about autism.” We stumble through our “here’s-the-way-Liam’s-autism-presents” speech, while the Resident half-listens and tells us that “he’s not really studied autism at all in school.”

After 3 + years of agonizing GI pain and loose stools, I finally convince my pediatrician to refer Liam for a pediatric GI consult at the local, award-winning Children’s Hospital.  When the GI doctor arrives, he starts out the exam by asking me “why do you suspect your son has autism?” I reply that this was not a suspicion, but a diagnosis and that there were clear biological gut issues that literally kept him up at night. The doctor dismissed this as “toddler tummy”, a condition that “lots of kids have,” and sent me home with some photocopies about avoiding fruit.

Frustrated with the medical establishment, I finally cough up the $600 bucks to see a holistic doctor in our area.  He asks me a handful of questions, skims the 20-page history I’ve painstakingly filled out, gives me a magazine about autism, looks inside my son’s ears, and then reminds me that we’ll have to pay for all the tests and the he prefers his fee in cash or by check. 

Is it any wonder that my distrust of the medical community has been growing? I have a clearly sick child, and no one is able, willing, or trying to help him from a medical standpoint!   

That’s not to say that all hope is lost—I have changed his diet through my own reading and talking with other autism parents— and that has produced tangible improvements in his health and behavior, but he still has a long way to go.  He is still a very sick little boy with a body full of medical anomalies that need study, funding, and consideration.

How much higher do the numbers have to creep before pediatricians, pediatric specialists, and other medical professionals get the memo that this is about more than changed diagnostic criteria? 3%? 5%? 10%? 25%?

April was Autism Awareness month and it’s time to pay attention. It’s time for the awareness to be spread outside of the autism community—where, believe me, those of us who love some with autism are very, very aware— and beg, plead, and demand that autism be treated for what it is: a serious medical condition with clear behavioral connections.  It’s time for the medical community to come together, find solutions, and start caring for and healing the other 1% of the nation’s children.  That's not too much to ask of the 99%, now is it?

Jamie Pacton is a mom, writer, and professor who lives in Milwaukee with her husband and two small sons.  Her work has appeared in The Autism and Asperger's Digest, Hyperlexia, Hopeful Parents.org, Now and Then, Parents (forthcoming), and other publications.  She grew up in East Tennessee, but moved north to study literature at Marquette.  Currently, she teaches writing for several online universities, so she can be both a stay-at-home and work-from-home mom.



Comments

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We need to change the headline: it's now approx. 2% of the nation's young people: children, teens, and adults (under the age of 30).

I have an appointment with a new DAN doctor in July, so fingers crossed there for the gains that Liam can make through Methyl B12 treatments and the allergy tests. I'm happy to report that he said: "no!" to me today for the first time, ever. I almost fell over and cried. This word was quickly lost in his babble, but with lots of fish oil, some things seem to be slightly improving. We shall see, and I continue to hope.

Thank you all for the comments and it hurts my heart that we've all been through similar things. I read the other letter linked here and just kept saying: "yep, yep, I know what you mean."

I'm thrilled to see that a future med student has responded and I think that spreading the word about our anger, our dissatisfaction, and our children's needs is what needs to happen now.

And yes, I think I will send this to my pediatrician too.
Take care all,
Jamie

You need to find a DAN (Defeat Autism Now) doctor. Ours has been fantastic (Dr. Berger in Tampa), and recommended a few things that made big differences in our son.

"...those of us who love some with autism are very, very aware— and beg, plead, and demand that autism be treated for what it is: a serious medical condition...."

This is why I am preparing to study medicine, as part of my goal to provide long-term care to severely autistic adults, who are unable to care for themselves. As you know, this population is often neglected medically because 1) they may be self-abusive and difficult to manage, and 2) they usually have only Medicaid insurance, which pays low rates of reimbursement, and those rates are getting even lower.

It is a steep climb.

I am terrified for my oldest son to start school next yr. I have refused quite a few vaccines. Almost avoiding the Doctors office unless its absolutely necessary. Schools are entangled in this mess just as the rest of us are. So terrible we are poisoning a generation. 1 in 88 is an epidemic. They are killing them without killing them. Wake up America.

Jamie, I can't imagine the trauma youanf your family have suffered thus far. I pray for you all!

There is a desperate need for an "Angie's List " for pediatricians, general practioners, and other medical professionals who have shown that they will actually pay attention to what is happening medically in children and adults with Autism.

I do send letters to my children's old peds - now and then.

Jamie, I could quiet easily replace your name with mine as with so many other parents.

The similarities are extraordinary.

Best Wishes

Elizabeth Gillespie
Mum to 10 yr old, non-verbal son

Anne, the "YOU SUCK" should be a form letter sent to every pediatrician in the country and unless they can prove otherwise.

Instead of Angie's List, it would be a You Suck list.

Thanks Anne for the "Thinking Moms Revolution" link.

I enjoyed every word of it, but my favourite paragraph was:

" My God I hope you are learning as children crash from vaccine damage in your practice. But if you are not, know this; The moment it hits you… the total sum of the damage you, individually, are responsible for, there is nothing I could say to you that will hurt as much as the cracking blow of that realization. "

My sis, mom of a beautiful boy with autism, age 22, spent the last few days with me, reading and commenting on a few of the pages I have linked. She was very lucky in finding Dr. Brenner here, who helped her son become an autism survivor, who started b12 19 years ago! Before that, she went to the pediatrician our family had always used, while there the baby slapped her, the pediatrician said, "slap him in the face", and mumbled " that's what's wrong with him no correction. This wasn't the dark ages, this was clearly the mentality and it doesn't seem to have changed. Many believe the children are mentally retarded as well, that was his first diagnosis at Kennedy Krieger, they told her to institutionalize him. While vaccines have done their damage, he is incredibly better. He wants a date, he has a job, he attends a class. Having Kennedy Krieger in this city has harmed more than helped. We need to change the mindset , mainstream medicine created the damage and can not reverse it. While a good doc like Brenner can.

I think most people on AOA have a similar or not exact story to tell...crazy 15 years on and not a lot has changed but ..the times are a changing..In our book diet ,enzymes,HBOT,water filters all help..

God bless..

Angus

Years ago, I believe there was a piece on 60 Minutes ??? about pediatric nurses who were in tears and wanted to "refuse / or stop being forced to give" the charming whole cell DTP shot... they had seen about enough.

The current CDC "four month well baby visit" call for eight (8) vaccines the same day...

About 1000 of these nurses need to be placed under oath and explain how they vaccinate their own children.

By coincidence Alison MacNeil put this out on Thinking Mom's Revolution.

The Letter I Wish I Could Send To My Old Pediatrician
http://thinkingmomsrevolution.com/2012/05/16/the-letter-i-wish-i-could-send-to-my-old-pediatrician/
You probably haven’t even noticed that I pulled my child out of your practice but I wanted to take a minute to explain why I did. You SUCK! Your lack of curiosity about my son’s medical decompensation and subsequent Autism after his over-vaccination under your care is offensive. Apparently “do no harm” really means “do not care”. . . .

"I have a clearly sick child, and no one is able, willing, or trying to help him from a medical standpoint!"

Jamie, as someone who has been thru a similar rigmarole a few years ago with my son, I can completely relate with you. The only consolation I can offer is that there are a few dedicated physicians out there with the expertise and commitment to help our kids, but with each kid being so different, we seem to be still far from devising a standard treatment protocol that works reliably.

Oh, Lordy; Been there with the medical people and even moreeeeeeeeeee.
It was the psy that wanted his 400 dollars up front - but my hubby said - NO!
So I had to look hard to get a whole group of them and it was for; "not"
Neurologists, after neruologist, and revisits to neurologisits all for "not"

-- here is one more
The general practioner.
We are talking 15 years or so back--- so things may have changed, but at that time the generals were not helpful at all - either- and I went to about five different ones before I give up on that.

But in the last five plus - an old country doctor that was the son of the only country doctor in our county when I grew up - was great!

He still has his father's office and his father's old wooden benches that I sat in as a child.

He kept my son from getting another tetanus shot in high school when I had a little Nazi school nurse after us. I had not a clue that it was the DTaP - I just thought it was the tetanus and nobody is saying either!
Plumb creepy - they are out to get us!
And this doctor got us into the seizure clinic at the Univerisity - to a good neurologist which by the way are a rare as hen's teeth.

But Diet and supplements were never mentioned - although it is in the literature in their officies.

How much higher do the numbers have to creep before pediatricians, pediatric specialists, and other medical professionals get the memo that this is about more than changed diagnostic criteria? 3%? 5%? 10%? 25%?

*********

Oh they got the memo alright, they wrote the god damned thing.

Its called " Deny Deny Deny". And it comes with a twisted foot note that says: " And when you're done offering ridiculous excuses for the damage you KNOW you inflicted, try to browbeat them into yet more vaccines for their child".

Jamie:

Your experience with the medical community is cringe inducing. I had similar difficulties in diagnosing my son. He had met or exceeded his milestones etc. but around 18 months I began to notice subtle signs that all was not right. My son's pediatrician concocted the perfect explanation for my child's increasingly "odd" behavior. "He's just jealous that you're pregnant. He knows that he's not the baby anymore." This was supposed to mollify me and did for a time. "Early onset sibling rivalry" seemed to explain my son's inability to sleep through the night, loss of verbal skills, inability to use utensils/cups, refusal to engage in appropriate play and sudden addiction to carbohydrates. He'll outgrow it if I show him he's just as important as he ever was. The new baby doesn't mean I love him any less. "If he wants to go back to drinking out of baby bottles, let him. He'll outgrow it.'

I eventually had my worst fears confirmed through another pediatrician. He took one look at my beautiful 2+ year old and said "I hope you believe in god or in any god... you are going to need one." Despite that cheery prediction, he was able to give me the information needed to start the diagnostic progress. Needless to say, it's been two steps forward and hundreds of steps back and another autism diagnosis for my daughter since my first concerns over my son.

Nothing much has changed since their diagnosis. My son is an 18 month to 2 1/2 year old in a 13 year olds body. My daughter is a 3 to 8 year old trapped in her 10 year old body.

Same old story, different child.

I don't expect our government to do much of anything about our very sick children. Why? because their proven record has been the "do-nothings." They have an excellent record when it comes to apathy & inaction in regards to autism and any number of health issues. Rep. Dan Burton is one of the few (very few) trying to make a difference in the lives of autistic children/teens/adults and their families. However, it's too little much, much, much too late.

Nobody knows me, but I'm always there,
A statistical reminder of a world that doesn't care.

http://www.youtube.com/watch?v=s59yXAtmaTw

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