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Children’s Hospital of Boston: Is Autism Really On the Rise?

Fat_cat_4 By Katie Wright

Hmmm. I wonder? Children’s Hospital of Boston which has been the recipient of tens of millions of our hard won autism research dollars still cannot decide if 1 in 91 American children on the ASD spectrum is real? To use their words, these numbers do not represent a crisis, a national emergency or epidemic but merely a “mystery.” It is all too “unclear” and confusing to say if the increase is real.

OK, does anyone else feel nauseated by this? The geniuses at CH Boston placed this most inane and borderline offensive headline on the front page of their website. Another researcher and non parent defended CH to me saying that it isn’t their job to develop an official position paper on whether the autism increase is real. Fair enough, but it was CH of Boston took it upon themselves to publicly declare that they do not believe there is an autism epidemic or crisis. I also called and e-mailed CH of Boston for a comment or clarification- no response. As a result of their non response I think their headline speaks for itself: CH of Boston would not describe the fact that 1 in 91 children and 1 in 58 boys on the spectrum as a crisis. What will it take? 1 in 10 boys, 1 in 2 for CH Boston to wake up to reality?

My second thought was a) who is giving CH of Boston money for autism “research”, b) how much, and c) what is CH of Boston doing with our research dollars? The answers in a nutshell are NIH and Autism Speaks science, tens of millions and basically studying genes. CH of Boston stars in the annual Boston Autism Symposium, This symposium is all genes, all the time, no environmental triggers, no innovative biomedical science, no vaccine discussions, no research about regression, little family input and has been basically been progress free. I swear, check out the past 5 years of symposiums- they are all the same! Same characters, same studies! Time stands still there!

The days where our community kills ourselves raising money and lobbying our representatives for increased autism research monies in order to hand it over to bureaucrats who “know best” are over, long, long over. It is time to start demanding deliverables, significant family involvement and meaningful progress before these institutions get another dime. And by progress and deliverables I mean progress according to our children’s needs- not progress according to a lab worker’s niche academic interest. Families want research on  helping their children now, adverse vaccine reactions, curing co morbid diseases and disorders, environmental triggers, how to halt regressions, immune deficiencies, the effect of adjuvants on a baby’s central nervous system- NOT 10,000 more studies on Fragile X, the genome or on a possible mystery mutation on chromosome 16.

CHOP and his sister hospital CH of Boston seem to believe that all this money just falls from heaven and into their lap. Guess what CHOP and CH- it doesn’t. You are not entitled to anything so start proving to our families that you are listening and working with us rather than actively undermining our children by declaring the autism epidemic is mirage. Downplaying these incredible prevalence numbers, rationalizing away their significance, hiding from our families, failing to treat our children for their co-morbid conditions, failing to attend DAN! conferences and instead holding futile gene fiestas won’t make these numbers go away. Maybe CHOP and CH Boston need to stop studying autism and leave these research dollars to scientists who truly understand the gravity of this crisis and are invested in helping our children. My son won’t miss their participation a bit!

Let’s use our money and influence to push autism orgs and the NIH to invest in scientific institutions that understand, at the very least, that 1 in 91 kids on the spectrum represents a real increase and a very real crisis. It is time to start demanding that every penny you raise for any autism research organization not be allotted towards more CHOP or CH Boston projects but instead directed towards scientists who work with, rather than against, the autism community. Instead these funds should go to progressive autism scientists with innovative ideas, integrity, and an actual interest in doing research important to your child.

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Comments

Andrea Hutchinson

My adolesant is cured from autism but has severe Fibromyalgia CFS anxiety can't sleep and his brain won't tell his legs to move He 6'3" 270 pounds on a 1200 Caesin free iet...I'm so afraid he's going to die...Please help or guide us to help! I'm afraid of losing him...I live in an area where the help is not good diagnosis a handful of pills and.....His I.Q is 150...We''l do any thing...He's 17 He wants to be a writer....We get bumped todoctor..He's 17...........Homebound teacher....Please Please Help...Any idea would be appreciative
Andrea Huthinson
Andrew"Townsend" Hutchinson
540-537-5893
404 Highfirld Road
Salem, Virginia 24153 We thank you

murray

The Autism Speaks mommy brigade of Boston is no doubt helping CH and other places like this gain as much money as possible. They are a pathetic bunch who are the Stepford Wives of places like Children's and other institutions in this city. Yeah, keep looking for that genetic connection Autism Speaks Boston-the most gullible crew on the planet!

Judy Brasher

Matthew Cyr
Title
Manager of Public Affairs at Children's Hospital Boston
Demographic info
Public Relations and Communications | Greater Boston Area
Current:
Manager of Public Affairs at Children's Hospital Boston
Past:
Senior Writer at Children's Hospital Boston
Education:
James Madison University

I doubt that Mr. Cyr would be listened to any more than we are even if he listened to us. If we were able to convinc him that our voices deserve to be heard, the physicians at CHB would not listen. He does not have the magic letters behind his name. Even those with MD behind their name are marginalized when they question the “sacred” vaccine program. Obviously herd mentality goes along with their herd immunity belief.

CH is a joke

CH is pathetic when it comes to addressing autism. Their main goal seems to be supporting all the big pharm. companies and making sure to convince ignorant parents of kids to vax them to the max and then drug them. Some of the parents in the Boston area really fall for this crap. One mom here, who thinks of herself as the next Autism Messiah, constantly claims that doctors told her that biomed wasn't for her kid but the kid is a perfect candidate for drugs. And the mom buys it. The fear I have of these types of parents is that they brainwash new and yet to be educated parents of children on the spectrum. Dangerous.

With the exception on Ladders, Boston is a complete joke when it comes to really understanding autism.

Eileen Nicole Simon

Obstetric as well as neonatal care standards need to be investigated. I have just submitted the following response to the CH post on autism prevalence:

Autism is associated with many different medical conditions. The "final common pathway" in the brain affected by all etiologies must be found that can account for the distinctive developmental language disorder. One of the conditions associated with autism is respiratory depression at birth. Clamping the umbilical cord immediately after birth (even before the first breath) became the "standard of care" in obstetrics beginning in the 1980's, which was the beginning of the increase in autism prevalence. Ischemic impairment within the auditory pathway of the midbrain is the greatest danger of allowing a lapse in the transfer of respiration from placenta to lungs to occur. I have posted more at
http://www.conradsimon.org/AutismPrevalence.html
I hope you will look into this in your research investigations.

Rita

I also took my son the Childrens hosp in Boston because I thought they were supposed to be so great...I called them one day after
I knew what happened to my son would probably be called autism.....we waited the the 10 months or so for the all day appointment only to leave there with my son devastated....not only did he have autism or pdd but did I know that 70 percent of kids with autism also had Mental Retardation??..so they told me to prepare for that too. Then they told me to get some ABA therapy and speech.

I never went back there, bought mself a computer (this was maybe 10 yrs ago) and did my own doctoring! My son is seconds away from recovery and they were so wrong!

Nora

Kristine,
The point being that I understand that we
cannot go after all of the hospitals, so pick the most important offenders and target one or a few hospitals with picketing,emails, faxes, letters, phone calls. If we organize this would work. Force one to capitulate and the rest will follow.

A Mom

I think they will be in the streets. I really do. Mental health is at the bottom of the barrel when it comes to what our elected officials consider to be necessary, budget-wise. And we all know the disdain they have for the homeless. I think I remember something about this being a very big issue in CA already.

And please don't anybody think I am being flip about my first sentence. I am the only provider, the. only. provider. for my 19 year old. There is no one else.

I can only pray that when my time is near, that God will take us both in our sleep. Until then, I am going to continue to fight like hell from my computer about these crimes against our children, these crimes against humanity.

Something as serious as a revolution is going to have to take place for those people to again chose people over profits. I can only imagine how the parents in the Air Force are feeling today, with the H1N1 shot being mandated for their children.

Today in the endocrinologists' office I read a sign on the back of the door: If you have diabetes, be sure to get your flu shot!

I thought about Kim and her Sharpie.

Elucidatus

I just finished reading about LADDERS/MGH and it seems like they are on the right track but they do not go into detail about what types of REAL therapy they provide. It seems like they want to help but are not sure how to help.

Its like they are willing to listen to you but not take into consideration anything that you have said. If it helps children then I am for this but it seems like they are only willing to try what is recommended by the AMA.

Not all children respond to ABA and the GFCF Diet. So what I am reading here is that they will do the best they can but if your child does not respond to the cookie cutter protocol then you are shit out of luck and then you are given the name of another center or hospital where they will do the same shit or less.

Hopefully someone can expound on their cookie cutter protocol.


Anne Dachel

Dear A Mom,

By "unwittingly" in the sentence, "The idea that the medical community has unwittingly poisoned a generation of kids is the unthinkable," I mean the ordinary doctors, some of whom have watched first-hand as kids have regressed. Many of whom have their own vaccine-damaged children. The mantra, "vaccines are safe, vaccines save lives" is chiseled in stone. While health officials have the evidence and knowingly cover it up, most doctors are good memorizers. They don't read the studies because official agencies tell them the studies show no link. That's enough for them. No matter how many children have autism, officially it'll never be a crisis nor will a real increase be recognized.
After all of us saying the same thing for years, no official can say that they really thought there was no link. They know the truth and they have no choice but to lie about it over and over and over. You write, "I don't believe the time when our children become adults is going to change anything. We will have to assume all of the hardships then, too. I don't want to wait until then to see if something is going to change. Again, I don't think it will - except that things will be worse for the families."
What will inevitably happen is that as children age out into adulthood, they will overwhelm services. As parents become elderly and can no longer care for them, the state will have to or they will literally be in the streets.
The governor of PA just did an official autism census. What he learned is shocking. The tsunami is coming
Rendell Pledges More Help For Autistic
VIDEO: http://www.myfoxphilly.com/dpp/health/111909_Pennsylvania_Autism_Census
MUST SEE....VIDEO: http://www.myfoxphilly.com/dpp/video/111809_5_spot%3A_state_autism_census_report
People will have to be afraid for the social and economic future of our country if we don't stop the autism epidemic. The United States simply can't continue
with two percent of the population (almost one percent of boys) disabled with autism. These numbers are real and we're starting to wake up to what they mean for America.
Best,
Anne

Kristine

We could certainly target CHB or CHOP but I doubt we could find ONE major academic institution that doesn't follow this antiquated party line. They all do it! ALL. Google "children's hospital ______ autism" and read what all these hospitals do for children with autism. Nothing.

Teresa Conrick

Hi Elizabeth. Thanks for posting. I am so sorry that you have pain. The amount of suffering so many have is heartbreaking. Your thoughts on vaccine harm and increases in toxins are right on target.

Have you thought about mercury in that fertilizer sludge?

Elizabeth Hensley

I am Autistic. Antidepressants and Armour thyroid and over the counter Isocort (google it) to help my adrenals, and Topiramate to help me sleep helps me. Drugs CAN be our friends! But so can lots of nutrients and staying away from gluten, and avoiding MSG which is hard because the FDA allows it to hide in foods under 40 different names.(Google that too) But when I do I avoid ALL melt downs. Yes. That is right. ALL of them. Being out in the Sun away from florescent lights and staying close to God and being allowed to be by myself away from hustle and bustle helps me too. Letting Turtle-me take life at my own pace instead of being forced to keep up with your Race Horse Neurotypicals is VERY important! Vaccines definitely harmed me. If nothing else it caused PTSD which they know now from studies of Soldiers is real brain damage. In Toddlers that may cause even more damage. That could be a lot of right there! If so Animal models may never find the problem. But exposure to sludge fertilizers my Father innocently fertilized our lawn and gardens with also harmed me. (There still are no warning labels on those bags) Remember Einstein was one of my kind. So is Stephen Spielberg and Bill Gates. But unlike me and so many of my kind now their guts aren't on fire and they can function! I can write this letter but I am too severely impaired by pain and exhaustion to hold down a job. As a Kid this was seen as a "behavior issue." I was seen as naughty and stubborn. I was scolded and punished! :( But I was just under too much stress, being asked to do more than I had the stamina to handle due not never EVER feeling well. God meant us to be but we were not meant to be so very sick! :( We are very bright! Tesla and Howard Hughes did not get too weird and too sick to function until they were old so they could give society their many wonderful blessings. Now society is so toxic and you inject us with even more poisons so we get too sick and too weird to function before kindergarten before we can give you Neurotypicals our invaluable contributions and this is being noticed! We not have an Autism epidemic. We have an epidemic of Sick Autists. You want to go on to Mars, to go to the Stars? Quit doing this to us! http://www.giftofautism.org

Natasa

Nora, that is a very good idea imo

WILLIE

Katie
As a childrens hospital it is absolutely their charge to discuss and have a position on autism as it affects children that is their job plain and simple.
As far as the money goes you got that right cut these bastards off. Tell them NO MORE MONEY and give back what we gave and do not be associated with our movement. When they ask why tell it to them straight, tell them we cut the money off forever because you are full of shit and we know it and you know it. That is it

December Courtwright

Wow. One fine day, a local state representative…or even a future President of the United States will have a child/and or Grandchild effected by poison (autism). There will be no more hiding behind the normalcy of the lives of “Brain mapping” scientist, or anyone else wasting families incomes on nothingness. And it being genetic?? My husband and I were college athletes with an immensely healthy family tree. Our son went from normal to having ASD…and now (with the help of our DAN! Doc) almost back to normal…and it’s genetic? This generation of parents will NEVER be fooled again. We will only get louder…and LOUDer…AND LOUDER until every parent knows just how evil America is at laughing at disease and drooling over money. Watching our son in pain every single day is like watching a murder victim attempt to stay alive.
It is fair to say that the writer of this article has some sort of mental disorder – oh, denial.

Nora B.

Lets target this hospital with a mass email,phone and picketing campaign. There was a group that did this up at OHSU for some other reason and they did get quite a bit of press. I don't live in the area, but an organized protest would bring light to this issue where currently there is none. Concentrated campaigns focusing our efforts on the worst offenders,I think might work. If the entire community would work together and highlight these hospitals or doctors, I think we could do some changing of minds. We are all so spread out over the country and the world, we need some concentrated show of force.

Liz Parker

What happens AFTER diagnosis?

...Many of these families take their children home - and find methods to recover them. Where is the recognition of the specialists and families whose children, destined for institutional care less than five years ago, are now on-track and fully functional?

Where are the clinical studies of THESE CHILDREN, who suffered severe “adverse events,” were diagnosed with lifelong, permanent disability, were written-off by programs like CH- and CHOP, like-minded physicians, therapists and educators as unable to learn, whose stacked medical and educational files stand taller than the child, herself - and who now are INDISTINGUISHABLE from their peers?!”

This research, is left to the impoverished families, themselves, sraping the bottom of the fundraising barrel for the pennies left behind after the pork-barrel projects like pork-CHOP suck our communities dry. After nominally funding stop-gap services for children and families struggling to meet their day-to-day needs, the community has nothing left to fund research...

Why is it the cost of helping a child to overcome the hurdles put in his path by “Autism” is so incredibly burdensome?

Oh yes, the intensive therapy (recommended by the Surgeon General), alone, costing upward of $65K annually, is not covered by insurance - by the way, thanks Autism Speaks, for that sucky, useless legislation that yields no benefit for most children with "Autism..." And this does not include the cost of neurologists, gastroenterologists, developmental pediatricians, nephrologists, hepatologists, eating therapy programs, and many more specialists and interventionists.

Why does our Government refuse to fund studies OF THESE CHILDREN?!

Heck, the Japanese have tried to do some useful research...“Reduction of autistic traits following dietary intervention and elimination of exposure to environmental substances” http://www.immuneweb.org/articles/slimak.html They demonstrated that modifying children with "Autism’s" diets AND maintaining a pure environment actually improved their functioning...

With spontaneous recovery from severe “Autism” so rare; there ought to be incredible scientific interest in the many cases where the years of intensive therapeutic intervention, started after the brain and body are properly functioning with the help of special diet, supplements for the brain, digestive aids, and efforts to alleviate mitochondrial and intestinal dysfunction, result in individuals with "Autism" functioning independently in a meaningful manner.

Enlightened parents now know that “Autism,” is more an expression of environmental harm, than a psychological disorder. Because each individual suffered a catastrophic event (many call it the “toxic tipping point”) at a different point in their development, the damage done to the body’s systems and functions is unique to the individual.

COP and CH- "Autism" research programs should avail temselves of the many standard medical tests at their facilities, and help identify where the harm is expressed in the children they so readily diagnose yet actively disavow. Effective doctors and programs use these to guide “recovery -” imagine that!

MRI of the brain, EEGs, SPECT scans, blood-work, blood-level allergy testing, nutrition testing, biopsies, and more make up the basis for determining what issues an individual is struggling with and enable doctors to put together a protocol for each individual. Take note - "Autism" is a label, not a life sentence...

Sadly, organizations like CH- and CHOP are too busy snuffling at the funds trough to spend their time sniffing out solutions for individual children.

This CRISIS should be front and center on President Obama’s platform. Our Government is responsible for all that many of these children suffer, and owes them therapeutic opportunity beyond psychotropic drugs; at the very least, Government should be heading-off further damage to the newborns from this day forward. At least since 2000 (http://www.scribd.com/doc/2887572/Simpsonwood-Transcript20Searchable), Government is informed of the danger inherent in our established vaccine practice. At the very least immediate research of HEALTH OUTCOMES of VACCINATED vs UNVACCINATED children (ages 6 - 17) should be undertaken!

Shame, shame, SHAME on those who put profit above the health and welfare of our citizens.

It is time to tear away the protective wall erected around vaccine practice and Pharmaceutical manufacturers. The “"National Childhood Vaccine Injury Act of 1986" http://www.in.gov/isdh/files/VICP.pdf needs to GO!

This system is broken and over 5,000 families have been waiting to be heard for well over five years. This system was designed as a "no-fault" system to compensate individuals or families of individuals, who have been injured by covered childhood vaccines; but has morphed into a fully adversarial kangaroo court administered by HHS and viciously defended by the DOJ.

The cost of providing the therapies and care that many of these children need is breaking families, nationwide, financially, emotionally, physically, and spiritually; money cannot un-do the damage which was wrought, but it can provide therapists, specialists, and the care these individuals desperately need to regain some semblance of health and learn to function more independently. Some of the MILLIONS should be directed to those individuals, themselves, who struggle with "Autism."

It is CRIMINAL to leave these families in limbo, struggling each day just to cope - while pouring millions into the mealy, mewling mouths of suckling pigs like CHOP and CH-.

It is unacceptable for an automobile dealer to sell a car with sugar in the gas tank, metal shavings in the oil, and nicked brake lines in order to assure the customer will return for repeated service and repair (and maybe some collision work); it is equally unacceptable for a Pharmaceutical company to provide vaccines that incorporate ingredients that are known carcinogens, tetragens, mutagens, heavy metals, allergens, and more (http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-2.pdf), to ensure that Americans will need significant medical and pharmaceutical “care” for the rest of their lives.

If this is the practice to which these companies are committed, then Pharma should shoulder the Civil cost of their “business” alongside any other shyster out to make a buck at the expense of an innocent consumer; take away the protections that prevent American citizens from suing Pharmaceutical companies in open court!

With Pharma's internal documents, research, and statistics made Public knowledge, maybe true research leading to meaningful recovery could begin where Pharma cover-up ends...

At the very least, it is time to snatch the millions of dollars from the snout of those rooting uselessly amid the fragments of the human genome and utilise these to actually evaluate what environmental factors might contribute to the root cause of "Autism" in the majority of modern-day diagnosis'.

Cathy R.

Katie -
A little over three years ago we started our biomed journey via yahoo medical boards looking at apraxia. After administering EFAs and VitminE to my nonverbal 5 year old son, he began to approximate speech and learn to speak. I talked to my ped and he wrote perscriptions for the many tests I wanted done to see what was going on with my chronically constipated child. He was kind enough to write the orders and then tell me he would be unable to understand any of the results that came back. "Call children's and see a GI or metabolic specialist".
I sat down in front of my computer and searched Children's website (my son had been there for ear tubes, tonsils, ortho consults, etc) for these specialists. I called and talked with a very nice woman and explained that I wasn't sure where to start. Should I see a GI or metabolic specialist, my ped wasn't sure (didn't need a referral we had a PPO) and could she help. Ohhh she was so kind and we joked about poop and she suggested I start with GI. I mentioned that we had just gotten my son's autism diagnosis a few weeks ago. Silence. "Well, I'm sorry. We can't help you. We don't treat autism here". "No," I said, "I don't want you to treat his autism. I need help with his stomach and digestion". She persisted "but I'm sorry, we don't treat autism here". I was stunned. So I hung up. And I found the DAN! network.
They also had a 2 year waiting list for an evaluation. I waited 3 months at the North Shore Children's hospital and was treated like a human being. I will agree with the comment regarding MGH/LADDERS. We are receiving comprehensive care and real help for my son's digestive issues with the help of Dr. Buie. It only took three f'ing years and god only knows how much damage to his gut and self esteem.
All these huge institutions that get autism money need us to hold them accountable so they don't go back to their offices and say "whew, job security for another year or two...mental masturbation time with statistics and genetics."
Feel free to email me - I'm assuming AoA has the email since it's required to post.
Many thanks, Katie - for everything.
Cathy

curtis

As before, "walk in a circle" to raise money and look for a cure.

The next year, the same group is told to walk in a circle "in the other direction" to look for a cure, and try to send in a bit more money this time...

Boston collateral

Matt Cyr-- One of your nurses and one of your doctors administered a series of full-thimerosal flu shots to my infant son in 2005. He never recovered. We now have a case filed with NVIC.

The doctor was very nice. I felt a little like some medical personel are unwittingly being inculcated into committing medical crimes unwittingly. It reminds me of how boy soldiers were being trained in Rowanda: they were run down to the point of exhaustion, blind-folded, given a Kalishnikov and told to pull the trigger, reassured they'd only be shooting at trees. Then they take off the blindfold and see a pile of bodies in front of them and what they themselves have done. With the exception of the fact that, in the case of certain untested, toxic vaccine combinations and other medical highly profitable procedures, not every body "falls" immediately, it's very similar. Before they know it, these young doctors have performed a "hit" themselves and their future silence and collusion about collective cover-ups are guaranteed. And every day there's more and more to deny.

We don't take our son to CHB for treatment of his autism, vaccine-induced inflammatory bowel disorder, rampant autoimmunity, mitochondrial disorder, mercury poisoning, non-inherited food allergies and the rest of the multi-system disorders he suffers from post-vaccination-- and not merely because to do so would be returning to the scene of the crime but because the facility offers nothing of any real use. The most CHB ever did for its own victim in this case is administer some genetic tests we never consented to (all of which turned up...nothing). Insurance won't cover the behavior therapies we do want and the remaining "treatments" offered by your facility involve lots and lots of psychoactive drugs manufactured by some of CHB's biggest doners, all with violent side effects and zero proven clinical benefits beyond extremely short term and dubious cosmetic effects.

I would bring all this up to staff members at CHB but, in our experience, doctors at CHB, as nice as they might seem in a day to day setting, become too emotional to carry on a cohesive discussion. I guess I'm the one who's supposed to be over-emotional considering all my family and my son have lost, but I'm not the one with dilating pupils, pinched lips, clenched fists and a patronizing manner barely concealing a seething tone in response to this topic. Guilt is ugly, as one of the editors of Age of Autism puts it.

A Mom

Anne Dachel, after decades of parents begging for help and decades of studies proving the damage, there comes a point (I think it came a long time ago) when it ceases to become something they "unwittingly" do.

They do have a choice. They could AT LEAST quietly remove all the neurotoxins from the vaccines and scale back the schedule. But instead they continue full speed ahead, disrespecting and belittling the families all along the way.

They are only making matters worse for themselves. Things aren't even close to being at a standstill.

I don't believe the time when our children become adults is going to change anything. We will have to assume all of the hardships then, too. I don't want to wait until then to see if something is going to change. Again, I don't think it will - except that things will be worse for the families.

I appreciate everything you do for us -- all of the AoA staff, Katie Wright and others, too.

Harry Tembenis

Katie:

It was an honor to meet you this past weekend at the National Autism Conference in Fort Lauderdale! Regarding BCH's autism program... we initially went there and ultimately found the LADDERS program at Mass General Hospital. LADDERS is 15-20 years ahead in the autism game. BCH is great for surgical procedures, MGH is phenomenal for Autism. We would recommend LADDERS/MGH to anyone!

Laureen Forman

Well said Katie - it's time to start our own Autism Research Foundation and getting the dollars into that to start directing the research that needs to be done. 1 in 91 is clearly not a crisis to the 'powers that be' and we can no longer waste any more time. I for one, would prefer that no one joins our club - it would make me elated to know that - even though I know it's going to be my reality for a long, long time.

AnaB

We need to fund NVIC campaign for a vaccinated/unvaccinated health outcomes comparision study. Period. Screw the rest of these fools who are doing Autism research like its 1995.

Teresa Conrick

I just went to check out the website at CHB. It is like a bad flashback of when Megan was diagnosed 13 years ago! Come on- what a bunch of crap!!

There is not one shred of medical research, labs, or pertinent advice - it is all BEHAVIORAL BALONEY!

Where is the information on mitochondrial dysfunction, oxidative stress, impaired immune functioning,( chronic bacterial, viral, and fungal infections), inflammatory GI issues- inflammatory brain/head issues, etc....?


http://www.childrenshospital.org/az/Site613/mainpageS613P0.html

"What is the treatment for autism?
Specialized behavioral and educational programs are designed to treat autism. Behavioral therapy is used to teach social skills, motor skills and cognitive (thinking) skills. Behavior modification is also useful in reducing or eliminating maladaptive behaviors. Individualized treatment planning for behavioral therapy is important as autistic children vary greatly in their behavioral needs. The use of visual supports are known to have a positive influence on learning and communication for many persons with autism. Intensive behavior therapy during early childhood and home-based approaches training and involving parents are considered to produce the best results.

Special education programs that are highly structured focus on developing social skills, speech, language, self-care, and job skills. Medication is sometimes helpful in treating some symptoms of autism in some children. Child and adolescent mental health professionals help families identify and participate in treatment programs based on an individual child's treatment needs."

The "big fat cat" needs the boot!

Anne Dachel

Katie,
Thanks for pointing out how medicine continues to fail our children. The massive effort put into denial is shameful and it will be remembered.
The CDC, AAP et al. have no choice. No one can honestly look at vaccines as the driving force behind the autism explosion.
The idea that the medical community has unwittingly poisoned a generation of kids is the unthinkable. It's just amazing that anyone believes they'd honestly look into this.
No, the rate could be one in 20, one in 10, and there'd still be no one expressing alarm or even real concern. Autism, the mystery, the puzzle, is here to stay. They have no choice.
It'll be the numbers of disabled adults applying for services that will expose all the lies. There'll be no denying the disaster when that happens.
Anne Dachel

Jamie

Kim---

Please add The New England Center for Children to your "EPIC FAIL" list. They are in bed with Children's Boston and the two together spend large amounts of time brainwashing parents into believing their childrens' autism has nothing to do with vaccines and they only need rote behavior therapy. The ignorance at these two horrible institutions is stunning.

PhillyMom

I'm ready to write my Senators to defund all autism research, especially at these two hospitals. CHOP cared so much for my sick child, they put him on an 18 month waiting list (he was 2 yrs old) to see a developmental ped at their Autism Center. If there is no increase in incidence, then stop spending the money. How many millions of dollars have been wasted on genetics, eye gaze studies and the like. Can anyone name one useable therapy that has come out of the millions of dollars spent on research at these two hospitals?

Lisa @TACA

one more thing: thank you Katie.

Lisa @TACA

Dear CHB,

I have three requests:

1) Please treat families affected by autism and especially their children with respect.

2) Please don't point fingers at families looking to you to be a leader in research and helping find answers for over a million children in the U.S.

3) Please lead or give the money back or decide if autism is important enough of an issue for you to continue to investigate. I have consulted your web site and looking at something that was placed in a time machine 20-30 years ago.

Autism needs attention to find answers soon - not in decades for families. Lead or get out of the way. Excuses do not work for families in deep crisis.

If I am wrong in my assumptions - please let me know. Based on comments here and feedback from families we serve it certainly does not appear that way.

Sincerely,

Lisa Ackerman
TACA

Rob

The author complains about an article on the Children's Hospital website but gives no link to allow others to read what was written there. Presumably this is the article being complained about:

http://childrenshospitalblog.org/is-autism-really-on-the-rise/

Jessica

While I have had no direct involvement with this place, it could have been written about my city's "resources" for autism as well (Riley Children's Hospital in Indy).

Riley has such close ties to Eli Lilly it boggles the brain. The only research ever conducted is how the latest pharmaceutical cocktail impacts a 2 year old with ASD. What's most disgusting is they convince newly diagnosed parents to spend $6,000 on gene research blood testing that tells them NOTHING about their child but advances whatever agenda it is they are pushing at the moment. I mean honestly - what the hell good does gene testing do a parent to help their child??

This leaves parents with the impression that they have "done all they could do" by doing all this gene testing and that their child was in fact, just destined to be severely ASD. They refuse to even run *basic* tests on these children's health status (you know, all that diarreah, rashes, self-injurious behaviors, low vitamin/mineral levels, food allergies/intolerances, and so on.)

It's just sick, sick, sick.

Katie Wright

Dear Mr. Cyr,

I only have a moment but would like to respond to your post.

On 2 occasions I called CH and left messages re: Hanson's article- no response. I checked for a web response for many days but found none. I just went to your link and you can not find Hanson's post there either. Why did Hanson wait a week to respond? Because this issue is not important?

I think it should be PAINFULLY OBVIOUS to any adult, especially someone working in the field of autism that ASD is flat out truly increasing, period, end of story. Hanson posed the question as if this was a very tough call. It isn't. Of all the issues we should be debating, questions about whether or not these numbers reflect a true increase is a collosal waste of time. CH only needs to say, yes.

Secondly, I feel it is you who are mischaracterizing my intentions. I am not a victim of my "emotions", merely a Mom advocate looking for CH to be accountable for the enormous amounts of research dollars received.How much of those research dollars are spent on issues or medical treatment affecting autistic children today? How many parents do you have sitting on your board? From the above posts it sounds as if CH of Boston has many dissatisfied consumers. That should be the problem on which you focus, not me.

A hospital who is the recipient of millions of autism dollars (largely raised by our families) needs to deliver and prioritize the needs of our children, especially those with medical problems.

Stagmom

CH Boston
CHOP
UH Cleveland
Hopkins
Autism Speaks
NAAR
CAN!
ASF
AAP
AAFP
ASA
IACC
CAA

EPIC FAIL. EPIC FAIL. EPIC FAIL. EPIC FAIL. EPIC FAIL.

AoA.

NOT GOING AWAY.

(Is it cocktail hour yet?)

Sylvia

What a crock! What other profession can completely suck a$$ at their jobs, but still continue to rake in tens of millions of dollars? Meanwhile families struggle just to get by. And for all that money we get to hear more B.S. about the "mystery" of autism. The only mystery is why they still get funding.

WE NEED TO THROW THE BUMS OUT! ALL OF THEM!

Neither CHOP or CHB should ever get another dime for autism research.

anonymous

Katie,

I believe that the above mentioned institution is trying to get all the mito people to submit all their records to see if there is a connection between vaccination and regression of symptoms, etc. They are particularly looking for people diagnosed with autism.

Several families are refusing to cooperate--they no longer trust such institutions. These "places" have no clue that parents only go to them for the diagnosis and otherwise think, for the most part, that they are worthless.

Nicole

I'm never sure what fires me up more....the articles or the comments that follow. All I can say is, thank heaven that Katie, Kelli Ann, Kim, and Mark B. are speaking for parents like me because they can write my feelings much more eloquently than I ever could!!

mlinn

Thank you, Katie. It seems as if the Combatting Autism Act and the IACC were good ideas in concept, but are failing in execution to really change anything or make any progress. Is there any way to organize the same support through Autism Speaks and the ASA to change the research strategy at the Federal level (i.e. new legislation)? Are there really constituents (as in families and parents, not paid employees and board members) who support the genetic research path? These two organizations clearly have the ear of Congress, is there any hope of changing them from within?

Stagmom

Last night Autism Speaks had a fundraiser at Carnegie Hall with Jerry Seinfeld and Bruce Springsteen. None of us could have afforded to go - but I'm sure they raised a fortune. Which will go to salaries, rent, and places like CH Boston who will spend it telling parents there's nothing you can do. Just get school and behavior therapy. Depressing.

MB

"And the Band Played On..."

maggie

People ask me all the time where can they donate money for autism. My answer is always the same - do not donate any money to any pharma front charity or hospital, go to your local grocery store and find a family with a child with autism (there will always be one there) and give the cash to them. The money will be better spent.

Kelli Ann Davis to Matt

“An emotional subject”????

Matt,

As someone who has been intimately involved "behind the scenes" for the last 8 years with high-ranking federal officials and who has witnessed "first hand" their lackadaisical attitude towards this CRISIS, “emotional” hardly describes the way I feel – try CRIMINAL – much better fit.

Kelli Ann Davis

Mark Blaxill

Dear Matt Cyr,
Don't flatter yourself or BCH. I count myself among the Boston families Kim mentioned. We received the autism diagnosis for our daughter from BCH. It was a miserable experience at every level. You people clearly had no emotional sensitivity to the experience of the families and nothing whatever of value to offer beyond the poorly delvered diagnostic experience. The clinging to an obsolete doctrine so strongly blinds you to the real opportunities for changing the trajectory of the disease that I truly feel sorry for the families who don't have the resources to recognize how incompetent your services are.

As to your pedantic remarks on prevalence and incidence, it's yet another example of the idiocy that passes for commentary when obsolete doctrine traps uncreative minds in intellectual mazes. If you or Dr. Hanson had any ounce of critical perspective, you'd force yourself to confront and explain how ten to one hundred fold differences in "prevalence" could possibly leave any ambiguity about trends in "incidence" in a condition where incidence is partially defined by symptom presence at three years of age, there is little excess mortality and the condition persists in the vast majority of patients. Your comment is a classic example of the kind of sophistry that makes our community so contemptuous of organizations like BCH. You are simultaneously incoherent and arrogant.

And did you really expect Katie to check Hanson's blog for a response to an email? Give me a break!

Stagmom

From the Children's of Boston Site. Don't waste your time there:

How can autism be prevented?

Preventive measures to reduce the incidence or severity of autistic disorders are not known at this time. With intense therapy and practice and schooling, however, children diagnosed with autism can improve social and other skills.

Stagmom

Matt, thanks for commenting. I know many autism families in Boston, none of whom would go to Children's for more than a diagnosis. Your autism info page could have been written in 1980, 1990, 2000 or 2009. It's out of date, basic and the same old, "It's genetic and there are behavioral treatments." It's a shame, since there are indeed docs treating medical conditions for autism with great success. http://www.childrenshospital.org/az/Site613/mainpageS613P0.html

Matt Cyr

Ms. Wright,
I have to point out two significant errors in your post. The first is that you have mischaracterized Dr. Hanson’s article. She doesn’t say that she believes that autism is not increasing; instead, she says that she gets asked the question often, which is why we chose to use that as the title of the post. A close reading of her article will show that, in fact, she believes autism IS increasing. From her post:

“Certainly there is an increase in prevalence, or the number of people diagnosed with an ASD at any given time. The incidence of ASDs, or the number of new cases over a certain time span, is less clear. But even when the reporting issues above are taken into account, new cases do appear to be increasing.”

The second error is that, as you said in your article, “I also called and e-mailed CH of Boston for a comment or clarification- no response.” If you go to the post (http://childrenshospitalblog.org/is-autism-really-on-the-rise/), you’ll see that Dr. Hanson herself wrote a response to your comment on November 16.

Certainly autism is an emotional subject and one that deserves every bit of attention and research funding that it receives (and more). However, mischaracterizing an organization that cares for many, many families impacted by this condition and is conducting significant research into its origins and treatments – and assuming that we only do these things for financial gain and that no one here is personally impacted by autism – is neither accurate nor productive.

Sincerely,

Matt Cyr
Editor of the Thrive blog
Children’s Hospital Boston

L

Thanks Katie,

But the truth is that most organizations raising money for research and most hospitals and schools receiving grants for the major diseases are all about the money.....for them. I used to open my wallet wide for kids with cancer and all the other heartbreaking illnesses and diseases out there. Try asking some of them what percentage of money collected actually goes to what they are collecting for. I have yet to be told anything over 26%. That is pathetic! They are spending 75-80% on administrative costs? It is even worse when you look at what most are doing with the funding as you did. This is not just for autism.

We need to wake up and make health professionals accountable before they bankrupt our country.

I no longer donate to charities or research unless the administrative costs or collecting are less than 40% and/or pharma isn't running the research. You would be amazed who that cuts out. Unfortunately, most people give out of kindness and emotions unaware that they are being exploited in the name of helping others.

We need to find and support organizations that truly are out to help.

L

Katie Wright

Thank you Cathy,

Could you please tell me more about taking your son to CH and how they refused to treat his GI problems? I would like to follow up on how or if they currently provide medical services to our kids. Or have the millions and million they received been devoted solely to genetic research.

Thanks, Katie

Thank you!

Benedetta

It will become a crisis only when it is their child afflected with autism.
Since they have no empathy are are in the wrong profession. They need to be working on wall street or something. Saddly to many people are in the wrong profession.

Cathy R.

three years ago Boston CH told me they could not see my son for various gi issues b/c the "did not treat autism". now that autism is big business....$$$$

SendThemMyBill

One can almost bet that if or when some CHB researcher comes up with a "product" to "treat" autism - they will call all media outlets and declare a national pandemic.

Deb O.

Katie,

Thank you for getting my Irish up before my second cup of coffee.

Why is 1 in 58 boys not an epidemic? The stats for flu related deaths is a tiny amount when compared to autism stats and yet, what is happening to our children is not an epidemic?

When you add in the increases in asthma, allergies and epilepsy, what we have is an epidemic of vaccine injuries.

I suppose their solution will be an autism vaccine!

A Mom

Why didn't Oprah draft a letter like she has done for other causes? Why didn't she do more shows for us last year? Didn't she do 3 shows about puppy mills last year? Why hasn't she done a show THIS YEAR?

Puppies!

The first bobble head, I mean first lady, got all up in arms about the freaking Olympics possibly going to Chicago.

The Olympics!

What in the hell is wrong with people!

These are OUR CHILDREN.

If vaccines were causing blindness at the rate it is causing autism, heads would be rolling. BUT NO, it is causing debilitating problems for our children. At least BLIND children can tell us where they hurt and can be TAUGHT how to avoid danger. Not so for our kids. And no one is upset but the families?!

I am so angry!!!

Don't tell me to try to be calm because the holidays are coming. Year 19 of freaking Elmo 24/7 while my child is home from school.

How dare those people do this to my child! How dare they continue to do it to your children.

A Mom

They've already studied how autism (their man-made epidemic) manifests in children. Eye movements, smiles, GI problems, seizures, etc. They know exactly what mercury does to a child! They know exactly what percentage of children have been affected. They know it inside and out. (And they also know the same about vaccines and asthma, diabetes, etc.)

They are making guzzilions of dollars off of our children and they have no intention of parting with that money. Just think of all the children that were diagnosed this year alone. That's 18-21 years of future revenue for them (Children's Hospitals)! Perhaps some individual doctors would object, but the people in charge - no way!

It is UGLY and the appropriate response....recourse has to be just as ugly.

What is this were children going blind?

It is criminal what has been done to our children and our families, how people have profited from it, and how we parents have been treated throughout the process.

CRIMINAL. Thinking of it as anything less, referring to it as anything less, treating it as anything less isn't going to accomplish anything.

Until every single family member who is affected gets pissed off and REFUSES to accept any part of this anymore, nothing and I mean NOTHING is going to change.

JIm Thompson

Thank you Katie:

“Its mission [NIH] is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.” See http://www.nih.gov/about/index.html#mission .

Instead it still uses funds from the 30.6 billion dollar (fiscal year 2009 budget) to only look at what genetics says about Autism while ignoring the known science about neurotoxins in vaccines? That is like the captain at the helm of the Titanic, at full speed, hoping to avoid an iceberg by studying them as they whiz by the deck. The autism epidemic is a disaster that needs leadership. Dr. Francis Collins could have already changed this outrageous lack of safety research and should be replaced immediately.

This important issue deserves the attention of Congress and President Obama.

Any volunteers to draft a letter?

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