Child Warriors: Christopher and Daniel
As if...

Age of Narcissism? Pop Stars Nancy Minshew and Denis Leary

Old_lady_pop_starBy Katie Wright

How fitting that these two self-obsessed boneheads are in the news on the same day.

I encourage all autism families to please check out the "Pop Star: Nancy Minshew" article (HERE.) But please, not if you are eating because you may become ill.

Last January, Minshew made a number of outrageous and baseless claims, on the record, to a journalist during an interview. Regarding parents who saw their children regress or become ill after receiving multiple vaccines Minshew opines: "you want to blame something…some people are not logical…" Minshew implores readers to agree with a judge's verdict (I guess not the Polings' judge) finding for Wyeth and dismissing the claims parents who saw their child sicken and regress following vaccinations. Minshew argues that vaccines do not trigger autism, stating that "the facts are autistic genetic abnormalities occur before birth." I guess the first 2 years of my son's normal development were an hallucination? Then Minshew eloquently states that all autism/vaccine discussions are "crappola."  Nice.

This would be a lot more funny and a lot less sad if Minshew, so eloquent and open-minded, has not received $32 MILLION in federal grant money for her autism "research." Let's review Minshew's ground breaking research findings: "the brain is pre-wired and waits for experience to teach us things…With autism the brain is short-circuited…autistic people have strained social skills" And my favorite: early intervention is good!  We will probably get some eye gazing studies thrown in there as well! Yes, that is correct, $32 million over the next 5 years, for redundant genetic research. This is not what I had in mind when I supported the Combating Autism Act. Autism Speaks assured us that this money would be well spent. I guess the joke is on me, or more accurately on Christian. I would also like to know more details about Minshew's involvement with Autism Speaks' scientific advisories bodies on which she serves.

Back to our "Pop Star" piece. The reader can almost envision Minshew smiling as she politely demurs being labeled a "star" and a "legend." In the piece we learn that Minshew is a "slim and stylish woman from L.A." who loves cats and parrots. She describes her cat as "regal and intelligent." Minshew raves about her travels in Italy! She also loves to read! I swear it is all there, read it for yourself.

"Dr. Minshew has been hard at work, groundbreaking work, for 20 years, putting Pittsburgh on the map and making quite a name for herself." Oh my God, who wrote this? A co-worker, a friend, Paul Offit??? Ok, enough fun. My point here in that NOWHERE in all of Minshew's "groundbreaking work" discussion on being a legend, traveling to Italy, do our kids even come up for discussion. It is all about Minshew and her amazing accomplishments. It is as if all this money was given to her by God almighty. Nowhere in this piece does Minshew acknowledge the incredibly hard work of all the advocates and family who worked tirelessly, campaigning for the autism research dollars that made her a "star." My parents probably made 20 trips to DC, exhaustively lobbying members of congress and the senate to fund autism research. I went with them on a few occasions. It was hard, hard work and guess who I never saw there: Nancy Minshew. Maybe she was in Italy, who knows, families like ours never take vacations.

We learn more in this article about her love of her parrot Andy, named for Hans Christian Andersen, than the suffering of autistic children. Nowhere does Minshew speak about the tremendous urgency to help our children in pain, families without resources, school without services. Nowhere does Minshew mention that autistic children and their families are in crisis, that 1 in 94 American boys are on the spectrum and that this figure is only rising.

This brings me to Minshew's soul-mate Denis Leary. It is all about them, more about them and how our kids serve their purposes and make them stars. For Leary it is about using our kids to sell his dumb, unfunny book. Tim Dwyer, retired NYC firefighter and proud father to Colin said it best in his letter to Leary when stating that our kids are neither lazy nor stupid and that Leary could not survive one day as a real firefighter or as a parent to an autistic child. Tim Dwyer went on to say that his son's school is struggling to stay open. There is no appropriate placement for Colin in New York City and Tim and Maria must sue the city year after year so Colin may attend a school for ASD kids. Money is very tight with the Board of Ed., families are losing their cases with greater and greater regularity and the Dwyers are pessimistic that they will get a fair re-imbursement. Tim says his son's school is struggling to stay alive and other options are few. In New York City parents must literally win a lottery to gain acceptance into the only public school for autistic kids

Just imagine the schools and services we could have for our kids with $32 million dollars.

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

Jack's Dad

Here's a reply I sent yesterday to the writer at Pop City:

Dear Ms. Smit,

I’m appalled by your recent “Pop Star” choice of Nancy Minshew. In your Oct. 15 article, Dr. Minshew states a cure to autism ‘may be found in her lifetime.’

Geez, take a short ride across town to the Children’s Institute in Squirrel Hill, and you’ll find Dr. Scott Faber, who’s already recovering children from autism. Sure beats waiting a lifetime for a cure. But waiting a lifetime probably sounds like a good deal for someone like Minshew, who makes her living on research grants. It’s a shame that our conservative medical community continues to reward researchers like Dr. Minshew, who scoff at theories about environmental causes of autism and continue to waste their time doing safe and non-controversial studies on genetics and facial patterns.

Suddenly, one in every 95 boys in this country is being diagnosed with autism before two years of age. I can’t say I’ve ever heard of a genetic epidemic, Dr. Minshew.

I suspect this won’t be the first (or the last) scathing rebuke you’ll receive on your so-called pop star. She has ignored the desperate pleadings of so many parents to more thoroughly research the connection between autism and vaccines. Instead, she publicly called such theories “crapola” in the Pittsburgh Post-Gazette. If she had watched her own perfectly healthy child regress into autism and intense physical illness immediately after a vaccination, perhaps she’d have a different attitude.

Next time, take a look at a real miracle worker in Pittsburgh like Scott Faber. He may not be “slim and stylish,” and have a cat named Zeus, but his waiting list is almost two years long. That’s because his patients – like my son Jack – are recovering from autism. That’s right, recovering. Jack was diagnosed at two with “moderate to severe autism” at Children’s Hospital in Nov. 2006, and through biomedical treatment, he’s now in regular preschool in Mt. Lebanon and is nearly imperceptible from his neurotypical peers. Now that’s the work of legend.


Debbie Fornefeld

My son just turned 22, so I assume that I've been fighting this issue a little longer than many of you. He is in college now, and has a life outside of autism, so I will mention only his nickname.
I remember when no one knew any verbal children with this diagnosis. Please excuse me for speaking up, but I have a different perspective. Nancy Minshew is probably largely responsible for the deluge of individuals who are diagnosed with autism, but not for the reasons that you might think. Bucky was diagnosed in the fall of 1992, when he entered kindergarten. Autism was rare back then. We did not see any other children with that diagnosis. I sensed something was going on with him since his birth, and took him to numerous physicians. After sitting in a waiting room to see one particular neurologist who was 2 ½ hours late, I was told that the only problem my child had was his mother. I lit into this doc, and he at least gave me a referral to a pediatric neurologist at a local children’s hospital. My son was nearly three years old by then and was using short sentences, so when the new doc said he wasn’t sure, but wanted to see us in another year because Bucky might be autistic, I forgot about going back. My kid couldn’t be autistic. There were no children who spoke with that diagnosis. What the doctor failed to tell me was that because of a few researchers, namely Dr. Minshew, they were now beginning to recognize that these children who were previously misdiagnosed with bipolar syndrome were now discovered to have autism. It wasn’t until he went to school that he finally was diagnosed with ASD.
To me it’s no surprise that my father had a diagnosis of bipolar syndrome, even though he never had any hallucinations, and never experienced any type of personality changes as a teenager. He took lithium for much of his life, it never seemed to help, and there was no therapy that offered any benefit or hope. He never graduated from high school; he had too many learning disorders to remain interested in attending school after the 8th grade. He received his diagnosis of bipolar syndrome with schizophrenia along with a Bronze Star and an honorable discharge from the Marines Corps after serving on Okinawa in WWII. He was determined to succeed in life; he started his own business and went on to earn three patents. In reality, I am convinced that he had Asperger’s syndrome. I grew up in a household where my father often had meltdowns, and he was at least as frustrated with the world as any of our children. One thing I can be certain of: A diagnosis of autism gives my son much more hope and opportunity for his future than a diagnosis of bipolar syndrome or schizophrenia ever could.
My son was the first student in his elementary to be diagnosed with autism. By the time he entered middle school more children were being diagnosed, and I was the person all of the moms with a new diagnosis were calling. My son was the trailblazer. I was the first of many mothers to sacrifice every good career opportunity I had been given so that I could get my kid through high school. Unfortunately, that’s what parents of autistic children often have to do. And the people like Dr. Minshew were busy doing what they do, so that information and ideas could filter down, and better methods, and more understanding could be there for my son and the legion that followed him. You see, when you are doing real scientific research, it is painstakingly slow and difficult. But done correctly, at least you know what you know and you do not have to be a victim of the charlatans. So pardon me. I have a different view of all of this than many of you. I am honestly grateful to Dr. Minshew.

Amber

While I would tend to agree that generally, the normal vaccination schedule is safe for -most- kids, I still have always preferred to break them up a month or so apart.

Pediatricians cannot force you to do them all at once, and most will work with you on staggering them a bit.

For me, it's the same for when the kids are on multiple meds for an illness- I stagger the medsso they don't get 3 meds at once. Instead, they'll get each an hour apart. Seems to work well.

Twyla

Amber -
Go to www.cdc.gov/vaccines/recs/schedules/downloads/child/2008/08_0-6yrs_schedule_bw_pr.pdf for the current standard recommended schedule. You will see that, for example, at age 2 months 7 vaccines are recommended, or 8 if the HepB shot is given at that time. Keep in mind that the DPT shot is actually three vaccines -- and the MMR is 3 as well. The new "Pentacel" shot is 5 vaccines in one.

As another example, at age 12 months if all the vaccines were given together which could be given at that age, the total would be ten, or 13 if the fourth dose of DPT was given at the same time.

Many of us did not question the standard schedule when our kids were being vaccinated. Today there is a bit more publicity regarding vaccine adverse events and safety concerns, and a lot of info on the internet, but a few years ago that was not the case.

And even today, many parents accept their pediatrician's advice without question, especially since groups such as the CDC and AAP are constantly telling us that the current schedule is safe and necessary.

Dr. Paul Offit insists that it is safe for babies to receive 10,000 vaccines at once. See http://pediatrics.aappublications.org/cgi/content/full/109/1/124.

If you think it is crazy to give 7 vaccines at once, then congratulations -- you have joined the ranks of parents who question the safety of the current vaccine schedule.

Amber

Just curious about this one statement made by a commenter...

"Dr. Minshew did not know my son before he was vaccinated 7x in one day"

WHY on earth would -any- parent let their child get 7 vaccs in one day? You all know by now I believe in vaccinating, and even I'm speechless at that one.

Twyla

Plus, what's with her necklace? Maybe that's what the pharma companies use to lead her around?

Cindy Lozano

Katie, loved the article! Just wanted to add quickly share my story... My son Alex wasn't diagnosed until he was 6. (About 9 months after receiving a flu shot, MMR, and DTaP.) He always reacted terribly to shots... 104-degree-fevers, asthma attacks, etc. He was fine before the recent vaccines (he had a few autistic characteristics, like occasional arm-flapping, but nothing major). Over the past year he has gotten worse and worse (lost all eye-contact, hates to cuddle now, spends literally hours a day arm-flapping and bouncing). Between the ages of 3-5 (when he did not have any vaccinations), he had only 2-3 asthma attacts. Since January 2008 (when he got the last round of vaccines), he has had over 10 asthma attacks and even pneumonia (strangely enough the same week one of the other students at his small private school was diagnosed with whooping cough.) As for genetics... I have over 30 cousins and my husband has over 80 cousins (his maternal grandparents had 17 children! Whew!), not a single one of them has autism or asthma!!! My 2 and 1/2 year old son always received his vaccinations 1 or 2 at a time, never had a fever afterward, has never taken antibiotics, and is perfectly healthy. Alex was on the GF/CF diet for 3 weeks and improved DRAMATICALLY!!! (He actually started to cuddle again!) Unfortunately, I had to take him off because we are now in a battle with the school district because they said that he is "too normal" for help, even though they said that he is functioning at the level of a 4-year-old. (We should have their official diagnosis by Dec. and then he is back on the diet.) Within 2 hours of giving Alex a slice of cheese pizza, he was back to arm-flapping and bouncing (which he had NOT DONE ONCE since about 4-days into begining the diet). Sigh.

GR

I really feel so sorry for the children of these parents who have "respect" and "value the opinion" of someone like Nancy Minshew. I know several parents like this and they are easily brainwashed by the do nothings in the industry. Truly sickening.

Michele I.

Hi Katie-
Great piece. I just wish we didn't even have to think about such bullshit all the time. It is hard enough to fight for our children's lives on a daily basis, without stupid people insulting our beautiful kids. and of course insulting us too. :o(

My son is a sweet, beautiful, innocent boy. He is an angel. He deserves the world- and he fights every minute of every day to get there. I hate that someone can belittle that struggle with a few words. It is so hurtful and so wrong.

Thank you for taking the time out of your busy day as an 'autism mom' to respond to this.

I hope Nancy is enjoying her trips to Italy. Maybe someday I'll get a research grant on how to take kids with autism on an international trip. Then my husband could visit his grandmother in Italy, and my boys could meet their great grandmother for the first time.
Maybe I could just send a picture over with Nancy and she could drop it off....

they all know

Simon Baron-Cohen knows. Minshew knows. Gerberding knows. They all know. Everyone knows that parents with high education levels have a correspondingly higher chance of having kids on the spectrum. It's like the dirty little secret that is not so secret, but that nobody ever discusses in mainstream media reports.

Why is this? It's because if this gets brought up, one would have to explain why there are no epdemiological studies with data sets restricted kids of parents in working at universities, law offices, or government agencies like the CDC. How about a vax/non-vax study on kids of professors, or lawyers?

The goal has been and will be to keep the masses in line, and make it seem that everyone shares the same risk. The whole public health system falls apart once people learn that risk is not equal, and they may be sacrificing for the herd. And since the kids making the sacrifice are the progeny of the people in charge of the whole charade (scientists, lawyers and doctors) internal revolt is the next logical step in the process.

kristin

Well, with people like her trying to look for the answers it is no wonder they haven't found any. She isn't looking for answers-she is looking for research to support the reasons she already determined are the cause for autism existing. This is why she has nothing. I read her words and I look at my kids and I could scream. All the money wasted. All the time wasted. All to feed her ego. Maybe if autism affected parrots she would take it more seriously. This woman turns my stomach.

Meg N

Wow! Where to begin?? This woman is unbelievable. I could go on about all the ridiculous things she has said, as I am a Pittsburgher, and unfortunately have gotten to see the celebrity on our local news and read her hate filled commentaries in our local paper. However, since you all have covered it so well....
I can't even believe they had the nerve to publish this idiot's grandiose lifestyle. I'm sitting here, -$300 in my bank account, about to lose my home and considering filing for bankruptcy, because I am paying for 2 boys to have biomedical treatments AND THEY ARE RECOVERING BEAUTIFULLY!!! When presented with the choice do I pay our electric bill or do I get Jayden and Duncan their enzymes and probiotics so that they can go poop and have a decent sleep of course I have to choose peace and health for my sons. Then I have to read about this bitch's trips to Italy??? I'm so happy that she's sitting pretty while I'm trying to figure out how I'm going to afford to buy the special foods I need for my youngest son who has 31 food allergies/intolerances. I'm so happy that the government who did this to my children is happy to hand her millions and millions of dollars while they give me crumbs to help my sons that they hurt to begin with. This doesn't just make me angry, it breaks my heart, because I know as tough as it is for my family there are many other families out there struggling to pay their bills and keep their homes in order to pay to recover their children.
Nancy Minshew is a villain of the worst kind. I live in Pittsburgh. I do not know one parent who would say that Nancy Minshew personally helped their child or gave them one iota of hope that their child could be helped. I do know of a mom who took her child to Minshrew's study, only to be told by the Autism Goddess that her child didn't have Autism at all and that the doctor who diagnosed him is overdiagnosing the disorder. Really??? How unprofessional to speak that way of another doctor right to his patient.
Bottom line. She sucks. Ask anyone from the Burgh. We ALL hate her. And we don't care if we're full of crappola.
My gloves are off, Lady. This time she's gone too far.

John Stone

I was just revisiting a pronouncement of Prof Simon Baron-Cohen of Cambridge University (UK) from early 2005:

"I believe that the cause of autism will turn out to be assortative mating of two hyper-systemisers. I believe this because we already have three pieces of the jigsaw: (1) that fathers of children with autism are more likely to work in the field of engineering (compared to fathers of children without autism); (2) that grandfathers of children with autism - on both sides of the family - were also more likely to work in the field of engineering (compared to grandfathers of children without autism); and (3) that both mothers and fathers of children with autism are super-fast at the embedded figures test, a task requiring analysis of patterns and rules. (Note that engineering is a chosen example because it involves strong systemising. But other related scientific and technical fields would have been equally good examples to study.)

"We have had these three pieces of the jigsaw since 1997, published in the scientific literature. They do not yet prove the assortative mating theory. They simply point to it being highly likely. Direct tests of the theory are still needed. I will be the first to give up this idea if it is proven wrong, since I'm not in the business of holding on to wrong ideas. But I won't give up the idea simply because it will be unpopular to certain groups (such as those who want to believe that the cause of autism is purely environmental)."

http://www.guardian.co.uk/science/2005/jan/07/g2

Baron-Cohen uses a straw argument "those who want to believe that the cause of autism is purely environmental" (who said that?) in order to disregard the issue of environmental triggers which would challenge the relevance of his theory. He says he would give up the idea if he was proven wrong but like the great scientist he is he ignores the counter evidence. AND he sits at the head of a great empire.

Still, no need to worry because according to Baron-Cohen "it has never been a better time to have autism".

http://www.edge.org/q2007/q07_7.html

It is a depressing thought that Baron-Cohen - in the words of the Guardian feature - could be considered "a leading thinker": perhaps a leading re-packager of unfortunate facts...


karenatlanta

A legend in her own mind.
Live my life lady.
The elusive Autism gene never reared it's ugly head in any family members or my other 3 kids! That would be my including my mother's family of 10 siblings and their children, nor the 81 first cousins. Notta one with ASD. Nor my husbands 7 siblings and their children.
Funny though, all my kids tested very high for Mercury. Good thing only one had the misfortune of doubled shots. I guess the "medical elite" just don't get it. Never in the history of time has their been a genetic epidemic.
Never.

Jim Witte

"the facts are autistic genetic abnormalities occur before birth"

"A Modest (Autism) Proposal":

Well *of course they do*! Everyone knows that..

But what they don't know is that probably 50% of the rest of the population *also* has those same "genetic abnormalities".. Mutations in MTHFR and CSB, other oddities in the metal metabolism pathways, can't deal with mercury, aluminum, arsenic, etc, etc.. An immune system that doesn't know how to deal with EVERYTHING, including "only-150-tiny-antigen" vaccines.. Doesn't know how to deal with 4-10 viruses at once without going absolutely nuts.. All SORTS of problems that we all have.

Good luck with those eugenics programs you're planing. You'll end up taking out at least a third of the human race once you find *all* the genes involved..

Seriously though, more than people who focus on genetics too much, are people who at the same time (not coincidentally) say that parents who say their kids regressed are ALL LIARS! 10 or 20 or even 200 parents all lying I can understand. But thousands? Tens of thousands? And this has been going on for over a decade now? That's one BIG conspiracy theory.

This includes anti-biomed people: if you don't have a "disease" defined by definite onset and not just "always genetic destiny", it's kind of hard to talk about "recovery" or "cure". I wonder, if these people saw a kid regress after a vaccination - IMMEDIATELY regress within minutes (rare, but it happens - like Aiden Quinn's daughter), would they change their minds?

For that matter, is there an "ex-anti-biomed" movement out there?

Jim Witte

Teresa

Thanks Katie, for not letting this bullshit get by unnoticed. That grant money is Minshew's ticket to Italy, or France and yes,the land of narcissistic denial.

It is amazing how these bizarre and inappropriate characters get involved with autism. Money, "prestige", grandiosity, and yes, full blown narcissism to pull it all off.

We will all witness the unraveling of these narcissistic types as our children, vaccines, and the increasing evidence continue to take center stage.

"Because of this, they are often envious and even angry of others who have more, receive more respect or attention, or otherwise steal away the spotlight."

http://allpsych.com/disorders/personality/narcissism.html

Say "bye-bye" to the grant money nest year, Dr. Minshew, as I suspect the cat may be out of the bag.

kasey

They have difficulty attaching meaning to facts,” Minshew says. “They don’t know what’s relevant. They can remember details but can’t get the big picture. They can’t problem-solve because they don’t know when they have problems.”


NO SHIT...THAT's WHAT MERCURY AND OTHER TOXINS DO TO THE BRAIN. Boy - this article tells us a whole lot of nothing except that she makes way too freaking much money for traveling Europe and telling us shit we already know.

jennifer

ewwwww! I was just reading some info at the military vaccine resource directory. That Rumsfeld guy has himself in some hot water. Maybe more communication with those resources at the military wouldn't hurt. It's really sad how so many of them have been damaged as well.

Amy Becker Clark

Thought I'd share an email I sent to Nancy Minshew back in February, in response to her declarations in the press of no epidemic and "the gloves are off." I typically resist the urge to respond to people like her as it diverts my time from more important things. But I was so sickened by how the obsolete old-guard of ivory-tower "experts" continue to command so much research funding. As Katie once said so well, they have failed to prevent and treat autism, and these are the only measures that matter. The strong-hold these people have on the research agenda and funding has got to be shattered once and for all. The new paradigm is where the research must focus: our kids weren't born broken, they were made sick, and sick kids can be treated!

2/8/08
"Dr." Minshew:
I have read your comments in recent press reports and can no longer ignore them. I can fully understand why an "expert" in psychiatry and neurology would cling desparately to her paradigm: genetic cause, brain-based disorder, no epidemic. Your entire career was built on this paradigm, and it is only human to avoid admitting that your life's work has been misdirected and wrong. But this paradigm is unraveling faster than you can defend it.

No study has ever supported a solely-genetic etiology for autism, despite decades and millions of dollars poured into this fallicy. The involvement of other body systems (immunological, gastroenterological) in autism's etiology is becoming self-evident and increasingly supported by the published body of evidence. You don't "see it" or acknowledge it because this is not your area of interest. But it is all too apparent to the true autism experts: parents who live with autism 24/7.

No epidemic? There is no evidence to support your conjectures (even you have failed to provide any): your diagnostic substitution theory is NOT supported by corresponding decreases in other disorders. Your broadening criteria hypothesis is not supported by fact: the criteria has NOT broadened, and the increased numbers of ASD diagnoses are NOT primarily comprised of "mildly afflicted" individuals that might previously have gone undiagnosed. There is a simple proof that even you could do if you were willing to challenge your paradigm: take what you consider to be the "broadest" diagnositic criteria for ASD and apply them to adults. You will NOT find 1-in-150 adults, and 1-in-90 men, fitting this criteria. Your "support" that the 1-in-150 rate actually exists among adults is down-right laughable: They were in institutions? They simply weren't allowed in schools like Forrest Gump? 1 in 90 adult men hidden away??!!?? The absurdity of your conjectures makes your self-preserving desperation all the more apparent.

The bottom line: your old paradigm (genetics/brain-based/constant prevalence) is obsolete. You are no longer the "expert." Under your watch, the disease of autism has reached epidemic proportions. Under your paradigm, autism continues to have an unidentifiable cause, and is uncurable. You have failed to arrest the epidemic rise in ASD, and failed to effectively treat and recover those afflicted. These are the only measures of effectiveness that matter, and you and your contemporaries have failed miserably. That must be hard for you to accept, but your discomfort is NOT acceptable justification to attack those who work outside your now-obsolete paradigm: the toxicologists, immunologists, and gastroenterologists who are finding cause and cure, and effectively treating this disease.

Your day is done. Stop spouting obsolete rhetoric. The more you speak out, the more apparent your failure becomes, and the more contempt you will engender among the community you purport to serve. For your sake as well as those with ASD, shut up and go away. Retire.

nhokkanen

I was going to write about Nancy Minshew's overgeneralizations regarding behavioral observations, but my 10-year-old son needs to get on the computer. You see, he's been doing 3-D modeling, and he realized he had several construction problems. So now he's working on problem-solving so he can build things for his friends. I guess that speaks against Dr. Minshew's paradigm (my son's choice of verbiage) well enough. That, and the fact that my son says she's full of... well... one of those less edifying words that mothers are supposed to discourage.

dan olmsted

reading katie's great piece, reader responses, and katie's own follow-up comment about christian's awful and immediate symptoms makes me think again that we need some kind of databank, or documentary, or something, about kids who have violent immediate reactions to vaccinations -- by which i mean, starting the same day or within a very few days, and regress. not every child affected by vaccines will have this, of course, but it is important evidence that some do. bernadine healy called for a study of 300 kids with this kind of immediate reaction. maybe we should start a project called The 300, or The Limits of Coincidence, or Bernadine's Kids, or something, and collect these testimonies and tape some and make scientists and journalists take notice. this idea that "vaccines occur at the same age as regression and therefore parents get all confused, especially because False Prophets like Age of Autism and Andy Wakefield and Generation Rescue and Jenny and the lawyers are messing with their heads" -- well, it needs to end. the failure not just of dr. minshew but of the mainstream media to "get this" just boggles my mind and makes me embarrassed for them, frankly, since it will all come out eventually.

Stagmom

Nah, I don't think there's anything fishy about our reader Kay. Even if she is a collague of Dr. Minshew she's welcome here. I

There are parents who truly do not realize or believe that our kids are treatable. That doesn't mean every child will recover to the point of losing the diagnosis. But there is SO much we as parents can do to help behavior, functioning, social acceptance, and how our kids feel about themselves physically and socially. Sadly, so many "top" autism docs tell parents there is no hope, there are only heavy duty neuropsych meds. Dr. Minshew is old school. And the old school no longer suffices for parents who are willing to risk all on behalf of our kids.

If I'd listened to the neuro at UH who told me Gianna had Oppositional Defiant Disorder (at three!) and would be on Ritalin by first grade I would not have the chatty, happy child who partied with 13 sixth graders last night while I sat with the Moms sipping wine. Every Mom commented on how well she's doing - and they've only known her for over a year. Yes, we're using some new therapies. Progress is her birthright.

If I'd listened to the neuro who told me to accept Mia's seizures as "part of autism" she'd still have a belly full of parasites and yeast and be wasted away on meds.

If I'd listened to my Mother and eaten my veggies I might not be so damn tired right now....

;)

Kim


Andy

It is quite puzzling how any reasonable parent could have any respect for Minshew. Sorry but this "Kay" seems a little fishy to me. What exactly would there be to respect about how Minshew bashes parents and clearly is absolutely useless when it comes to helping our kids in any way. It just disgusts me that anyone would defend a person like this, but I'm not convinced Kay is an actual parent. Just my opinion.

katie wright

Kay,

I welcome your point of view as a fellow parent with a different opinion.

I just wish Dr. Minshew respected my point of view, instead of labelling it "crappola" as she did in a previous interview. I would never presume to imply that I know why autism happens to every child in the spectrum.

I wish Dr. Minshew afforded families like mine with the same respect, before stating definitively over and over again that she "knows" vaccines shave nothing to do with autism. Dr. Minshew did not know my son before he was vaccinated 7x in one day, she did not hear his screams for an entire day and night, she did not hold his body as it went stiff as a board, she did not have to give him ice water baths, every hour all night, she has not in the hospital with my baby who still had 104 degree fever a day later. She was also not in the hospital weeks and months later as he acquired strep, staph and cellutis infections either.

Given the enornmity of suffering among this community and the plethora of unaswered questions, despite decades of Minshew-style research, I think the least we can expect of autism scientists is to have a open mind.

Kay C Haun

Hi Kim

I've never thought to "google" my name so after reading your response I couldn't resist and there is indeed a person sharing my name who is president of a pharmaceutical company!! LOL
To my knowledge I haven't done anything in life significant enough to warrant having my name show up on google

And yes I do respect Dr Minshew and her work

Thank you for graciously allowing me to disagree on your forum...

As parents of children on the autism spectrum I wish all well in their ongoing fight advocating for our kid's needs....

thanks

-Kay

Tanners Dad

Isn't there one Senator or Congressman that we could send this article to and ask the question... How long would you keep your job if your constituents saw no results in 20 years... get almost $22 million and promise nothing... Except that you will take a few trips to Italy?

Angela Warner

“They have difficulty attaching meaning to facts,” Minshew says. “They don’t know what’s relevant. They can remember details but can’t get the big picture. They can’t problem-solve because they don’t know when they have problems.”

This honestly made me laugh!!! OMG!!! All the "agencies" who are adamant that vaccines do not cause autism... well this paragraph sums them up perfectly, although with the exception of the last sentence. They know they have a BIG problem. But they know if they "solve" it, they'll have an even bigger problem on their hands. One that they may not be able to solve.

I thought of saying if she loves Italy that much then she should go and stay. I then thought better of it. That would not be good... she needs to go somewhere where there are no children she can harm.

jennifer

Anyone who really gets in there and does the research and has ANY common sense would come to the conclusion that we are over-vaccinating and that MANY children are being harmed by some of the vaccines (to be vaccinating children against chilcken pox is ridiculous as is giving hep b to babies!!). THis idea seems to stir up a lot of fear for some people but, mark my words, the tide is turning and the lame approach to the research (i.e. not even comparing vaccinated with non-vaccinated as a control group) will be questioned-they can't play this out for much longer. Anne was right-in my city an obstetrician wrote a letter to the editor about what an unproven vaccine the HPV shot was. The other obstetrician in town who promotes the shot is not giving it to his own 3 daughters! (my friend is a nurse who works with him and she point-blank asked him. What a joke...what a scumbag......
It just kills me that when we are pregnant we are supposed to avoid toxins and be careful and yet they expect us to let them mainline a bunch of questionable ingredients in to our precious babies. I am not completely anti_vaccine but I think they need to research the ingredients (as in REAL, scientific research), drop some of them and let us decide which ones are most important.

Steve

"Slim and stylish" wow that is not the only truth being stretched in that article. How about "man-faced troll that could have passed for a granny in high-school".

Kelli Ann Davis

Katie!

This is by far one of your best articles yet – somehow, you had me laughing and fuming all at the same time.

I too picked up on the money issue and was completely numbed by this little tidbit of information, “…in September for $12 million over three years from ***HRSA***.”

Okay. So let me see if I’ve got this right: HRSA (you know, the folks that oversee the whole National Vaccine Injury Compensation Program and who hold the purse strings to the billions of dollars in the compensation fund – assuming the money *IS* still in the fund -- wink, wink) is providing $12 million dollars to Miss Nancy to help find the origins of autism and we’re supposed to *TRUST* the results of this study??

Rigggghhhttt. (I could generate more suspense of future results with my Magic 8 Ball.)

Oh, and let’s not forget this is the *SAME* department within HHS that put out a press release on the Hannah Poling case that was in *complete contradiction* to the press release issued by health officials in the *other* department at HHS who actually looked at her medical records and made the initial ruling.

Oh, but what am I worried about; after all, Miss Nancy will be fair and balanced in her quest “to generate a lot of evidence and disprove a lot of theories” cuz Kay says so.

(I thought real science was supposed to be about looking at the evidence presented *without* any preconceived notions of *disproving* a theory? But then again, I'm no "Blaxill in a dress" ;-)

PS....Kay, you said you have 4 sons, one with autism, but in your initial statement you curiously make this comment: "and comparing her dedication and commitment to helping kids on the spectrum" as if you're making a third person observation.

If I had made the statement it would have been "helping OUR kids...."

Again, just a bit strange considering Kim's point about *another* person with the same name who's involved with Pharma.

Anne Dachel

Since I live in western WI, I hear a lot about MN news. On May 5, WCCO-TV in the Twin Cities calmly told viewers that the autism rate in MN is officially one in every 81 kids in their schools. That's an average though. WCCO also found that "the largest districts are servicing children at an even higher rate than the state average.

"In the Rosemount-Apple Valley-Eagan district, 1 in 44 children are classified as autistic. In Osseo, that number is 1 in 51. In Minneapolis and Anoka-Hennepin, that ratio is 1 in 69. And, in District 112 in Chaska, ... it's 1 in 55."

http://wcco.com/specialreports/autism.spectrum.diagnosis.2.716184.html

The autism specialist from one MN school district Michelle Tierney said, 'There are more kids. I don't know why.'

And no one seems to be in a hurry to find out either. No one is really worried about what's going to happen to all these upcoming autistic adults. No one has to be concerned right now. These kids are being cared for by parents. That will all change in the next few years. A tsunami of applicants will descend on Social Security and they'll all be eligible for monthly disability checks.

Later, when mom and dad can't care for them, the taxpayers will really have to come up with the cash to house and care for the autism generation in MN and everywhere else.

Since smiling Nancy Minshew is "a legend" in autism and "has been hard at work, groundbreaking work, for 20 years," she'll be the first one we turn to for advice on how we'll ever provide for all the dependent adults. She can tell us again how autism is genetic disorder and that autism is nothing new.

Anne Dachel
Media editor

Julie Swenson

"Sorry folks but that's the truth..."

Sorry to inform YOU Kay, but I can guarantee you that every parent who watched their children have reaction after reaction to vaccines and watched their childrens' desperately-misfunctioning immune system just finally say ENOUGH. At that point, within hours or days (hours in our case)they watch the drastic decent into autism. All those parents will say (and rightly so) that one scientist's research matters not a whit to personal experience. An experience shared by tens of thousands of parents.

Do realize how many doctors are now speaking out against this overload of toxins we impose on our kids? Many of them either have children or grandchildren that had the exact same thing happen. In fact, there is a growing number of doctors that refuse to vaccinate their own kids? Why do you think this is?

(Julie is a hardworking WARRIOR MOM, RESEARCHER, w/ CREDENTIALS (aka a vaccine-injured child))to back her statments....

'nuff said.

John Stone

20 year of research by Dr Minshew, and many others, into the genetic basis of autism has been met by remarkably little success. Strangely, the Holy Grail never gets any closer either. By what right (or what caprice) do they pursue this irrelevant nonsense, and do they really believe it?

Reputedly, when a researcher associated with another such legend proposed going down the vaccine/biomedical route they were told "You are going to saw off the branch we are all sitting on!"

And yet here we are: at this desperate financial time the presidential candidates are forced to talk autism, which wasn't even on the radar screens when Minshew started her great work. Is that a success, or is it a sick joke?

Stagmom

Hi, Kay, no discrediting meant. Just curious that a Kay Haun is president of a pharma related company with a topic that is very much pharma related. It's not like your name is Sue Jones or something equally vanilla. You provided your name and I googled you. Up popped PharmaSys after a couple of clicks. You seem to be a big fan of Dr. Minshew. We are not. But you're more than welcome to post your opinions here. THanks very much.

Kim

Kay C. Haun

h-m-m-m
Am I reading correctly by interpreting that someone is claiming that I Kay Haun am the president of Parma Sys????

I don't know when that happened as I am not privy to that fact...

I am merely the mom of 4 sons the youngest of whom is on the autism spectrum

Dr. Minishew or no pharmaceutical company has ever paid me anything.....

If you want to try to discredit me go ahead, but please use only verifiable facts...

Really Kay, do you exepct anyone here to believe that you have any interest in the kids? Give me a break! How much does Minshew pay you?

Posted by: give me a break | October 19, 2008 at 12:24 PM

Kay, what is Pharma-Sys' relation to Dr. Minshew?

“Phillip Martin brings to PharmaSys a wealth of experience in driving profitable growth,” said Kay Haun, President of PharmaSys, Inc. “He understands the challenges in a constantly changing industry, and he understands the leading role that PharmaSys intends to play. We look forward to the contributions that Phillip will make to the company’s successful implementation of its growth strategy.”

give me a break

Really Kay, do you exepct anyone here to believe that you have any interest in the kids? Give me a break! How much does Minshew pay you?

Stagmom

Kay, what is Pharma-Sys' relation to Dr. Minshew?

“Phillip Martin brings to PharmaSys a wealth of experience in driving profitable growth,” said Kay Haun, President of PharmaSys, Inc. “He understands the challenges in a constantly changing industry, and he understands the leading role that PharmaSys intends to play. We look forward to the contributions that Phillip will make to the company’s successful implementation of its growth strategy.”

PharmaSys, Inc. has been offering a full range of trustworthy and defendable validation and compliance consulting services since 1998 to assist companies worldwide. PharmaSys’ full range of FDA focused services provide a high level of regulatory compliance and protection. Services include validation, compliance support, commissioning, auditing, and qualification. These services are available for clean room environments, software/computer systems, processes, equipment, and facilities utilized in the drug (biotech and traditional) and medical devices industries. PharmaSys corporate headquarters are located in Cary, North Carolina. More information about PharmaSys is available at www.pharma-sys.com.


Kay C Haun

Nancy is a hardworking SCIENTIST, RESEARCHER, w/ CREDENTIALS to back her statments....

She has the background, knowledge and is able to appropriately defend her arguments

and comparing her dedication and committment to helping kids on the spectrum w/ the outrageous statements of Dennis O'Leary is nothing but ridiculous and ignorant

Sorry folks but that's the truth...

Cindy W.

As someone from Pittsburgh who personally knows Nancy Minshew -- you hit the nail on the head. She is one of the most narcissistic people I have ever met in my life. My husband, who holds 2 masters degrees and a PhD, summa cum laude, who never says "boo" about anyone -- hates her.

She is one of the most arrogant people I have ever -- and I mean ever -- met in my life. She doesn't care about our kids. She has an ego the size of Texas, and anything that feeds that ego exponentially multiplies her view of herself.

I remember once when I had an interview with her on video (I made a video for Autism Speaks back when I was clueless...) in which she said "I am it. There are no other scientists coming up behind me with the skills and talent that I have to find a cure for autism."

Wow. It must be lonely at the top.

And you know what? It *is* lonely. Living in Pittsburgh I can tell you that she has very few friends and her staff turns over like windmill propellers in a hurricane. Even they can't stand her.

Have you met her? She stands about 5' tall in all of her Napoleonic glory. I'm so glad you've told the real story, Katie, because I've been spouting it for so long.

As far as her "gloves off" article where she berates the biomedical community or anyone who doesn't believe in genetics -- what do you call a researcher with a closed mind? Aren't they supposed to have open minds? Aren't they supposed to be open to all possibilities? Because if you're not -- you're just a whore to an industry manipulating the facts for an outcome that was predetermined -- probably by whomever gave you the money to do the research in the first place.

I will proudly sign my name:

Cindy Waeltermann
AutismLink

Anne Dachel

So this crusader is debunking the claims that have "little hard evidence."

Or in her own words, she's 'set out to generate a lot of evidence,' and 'disprove a lot of theories.'

The POP piece tells us, "Dr. Minshew has been hard at work, groundbreaking work, for 20 years, putting Pittsburgh on the map and making quite a name for herself. The research she and her team have done has helped doctors pinpoint the exact location of the brain disorder and changed thinking about autism as a systems disorder. Minshew believes that the problem of autism will be more fully understood and and that it will be solved eventually, perhaps in her lifetime."

"In the world of autism research she is already a legend." . . .

Really? She's watched autism overwhelm our children for 20 years
and she's not alarmed? What has she done to help these kids?

The mystery of autism will be solved "perhaps in her lifetime"? . . . Wow. Parents desperate to help their disabled children and scared to death about their future will really take comfort in that.

Looking at her smiling countenance talking about a health care disaster is eerie and and leaves me feeling incredulous. We have hundreds of thousands of disabled children who weren't here twenty years ago and she's hoping for an answer "perhaps in her lifetime"?

Minshew's casual attitude in the face of the biggest health care disaster in our history leaves me disgusted. How can she make a living off these kids and not care what's happening to them?
Anne Dachel
Media editor



Holly M.

What pisses me off is this women has a job. The one I used to have, where I wore nice clothes, sat behind the latest computer and earned an excellent salary. I haven't bought new clothes or a new computer since 1999 and I don't ever expect to reenter the workforce. What's worse is her work is worthless. Who is attending her conferences? Paul Offit et. el.?

Sam

It seems this type of propoganda will never end as long as we have parents like Judy Ursitti (out of Massachusetts who wrote the following on AOA a while back) who do not educate themselves thoroughly, fall for people like Minshew, and then becomes a spoke person for Autism Speaks and spreads more ridiculous information to unknowing parents. Parents such as this do not help whatsoever and create an endless loop of useless information.


She wrote the following:

I do find A of A a bit sensational and negative ... but hey, that's just one crazy autism mama's opinion. It certainly doesn't keep me from reading it.

I also think Dr. Minshew has the right to her opinion as a researcher and wanted her to know that. The diversity of the Autism Speaks scientific advisory board is a help, not a hindrance. If everyone had the same viewpoint, once again in my opinion, progress would be impacted.

In the mean time, instead of tying up the AS phone lines to complain, maybe you could spread the word about the new round family services grants they are offering. You can read more about them at http://www.autismspeaks.org/community/fsdb/grants.php

Peace out,

Judith

Tanners Dad

Ok Katie... now we have gone to far. I said yesterday that the AOA article on Every Child by Two gave me enough ammunition to fight and forget my coffee. Now you have me fired up...
I can just imagine 5 to 10 years from now, when the facilities are over run, parents are committing suicide, parents are killing their children, children are abandoned (do A search for the new Nebraska law), and Congress gets their act together to realize that they need to bail out parents and the system to help these now grown poisoned kids...

Oh wait...All that has happened except for the part where Congress wakes up to the tune of about a trillion dollars...

Anyway, Just imagine when they put Miss Nancy on the stand to see what she has done with the approx. 30 Million she has wasted in the last 25 - 30 years. This genetic and symptom research is going nowwhere. I do not need a multi million dollar study to tell me that my son does not yawn when I do. Just ask any parent... We will tell you. They stare at our mouths and not into our eyes.

I think the public outrage is going to a lot louder than hunting trips, sales reward banquets, and spa treatments were for AIG. At least in AIG's case they are a corporation which at its non-existent heart is supposed to be a money sucking pig. What is Nancy's defence going to be.... I hope and pray that our recovered children are the ones asking the questions in the senate, congress, and as lawyers getting the true amount owed to our kids by the pharmaceutical industry. Thank God there is no statute of limitations in Hell...

Oh I almost forgot..Thanks again Katie!
http://www.causecast.org/member/tanners-dad

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