“The New York Times”- Where Hope Goes to Die
By Katie Wright
Yesterday, Lisa Belkin, a freelance NYT writer gave her column space to a very angry and defeated sounding autism Mom, Lisa Kupferberg Carter.
Ms. Carter is not furious with the dismal state of autism research, the foot dragging at the NIH to invest in treatment research, the scarcity of schools or the lack of insurance re-imbursement for basic therapies.
No, Ms. Carter aims a decade of anger at Jenny McCarthy. Jenny McCarthy?
Bizarre, I know. Did Jenny give her son autism? Did Jenny stop Ms. Carter from obtaining a diagnosis, therapy or an education? Did Jenny tell Ms. Carter to give up all hope? No. Then why this crazy rage at another autism Mom who as blameless as the rest of us?
What Jenny IS guilty of is listening to thousands of parents across the country and taking their concerns seriously. Jenny is guilty of shining a light on the ever growing population of chronically ill ASD kids, whom the medical establishment has ignored. Jenny is also guilty of writing a book about different Moms’ struggles to help heal their seriously ill children. Jenny also wrote a book with a doctor who is an ASD parent himself. And you know what Ms. Carter, that book helped me and thousands of other parents a great deal. I recommend that you actually read it.
I would never presume to tell other parents what to do or what not to do for their ASD child. Jenny McCarthy doesn’t either. No one can “make” an adult “feel guilty” for not trying this intervention or that intervention. We are all grown-ups here and responsible for ourselves. Projecting blame onto another parent who has no control over your child or the cause of anyone’s autism is ridiculous.
Why this irrational anger at Jenny McCarthy for helping sick kids? How on earth do other Moms talking about their kids’ interventions negatively affect Ms. Carter? I think I speak for many Moms when I say I was absolutely thrilled when Jenny came on the scene. Until Jenny, sick, regressive kids were almost NEVER discussed, researched or taken seriously by the medical community. Those facts, and Ms. Carter likes facts, did negatively affect my son.
I think we can all agree there are many different forms of autism, such as: classic from birth, healthy kid with autism, healthy regressive kid with autism and regressive and chronically ill kid with autism. Unfortunately it is the last category that has experienced exponential growth over the past 10 years. And wow, have our kids been ignored.
Ms. Carter believes only early intervention offers hope for our kids. She refers to EI as the “gold standard.” Well guess what Ms. Carter, we spent our life savings on that “gold standard” and my son got worse! That’s right. ABA doesn’t work if one is in chronic pain. Because so many underinformed doctors obstinately cling to the belief that autism is a “brain disorder” not, in some cases, a total body disease, my son suffered with unbearably painful but treatable colitis for a year. He couldn’t learn or make any progress because he was having diarrhea 10x a day and nothing mainstream doctors advised was helping. In fact their advice, to keep wheat in his diet, made Christian worse!
Parents line up of for hours, fill thousand seat rooms to meet Jenny and hear her speak because she is a voice for kids like mine. Why does that bother you so much Ms. Carter? If you want to buy Fred Volkmar’s book and say it is great, who cares? If you did ABA, Floortime or RDI and it helped your child but not mine, should I blame you for that? Of course not. Different interventions work for different kids.
Ms. Carter cites a terrible experience with a DAN! Doctor. I certainly sympathize with her. There are some bad doctors out there. I too have heard my share of useless and sometimes harmful advice. An ABA supervisor once told me to stop showing my child so much affection and “make him earn it.” Christian had a spinal tap to “rule out a rare genetic disease.”
Needless to say almost none of our kids have that “rare genetic disease” that too many doctors spent our time and money searching for.
Guess what did really help my son, the specific carbohydrate diet! Ms. Carter labels IVIG as unproven and possibly dangerous science. You know what Ms. Carter IVIG helped my son tremendously! He went from being chronically ill, catching every possible cold and infection to being in the healthiest shape of his life.
My son is nowhere near recovered but I refuse to back down and settle for “reasonable hope.” If that is Ms. Carter’s choice, great. But please stop projecting your frustration and anger by judging other Moms who do have hope and want more biomedical research to help our sick kids.
Katie Wright is a Contributing Editor for Age of Autism. She serves on the boards of SafeMinds and National Autism Association.
Yes I agree. We are getting better! And it's due to hard work, to study, to listening to one another and listening to the advice of others in the autism community. To doctors who are unafraid of the truth, and our willing to fight for us and treat us, not cast us aside!
Because warriors like you, my own mom, and warrior fathers won't give up, won't be turned aside, and in the words of my mom "won't allow autism to become a crutch to thier children living thier lives." Because of men like my stepfather who do everything and sacrafice so much so that I could improove.
Because the herbs that were used in the past sucessfully are being used again and are having results that horrible meds do not. Herbs and vitamins that do not make me nor my fellows suffer from horrible side-effects that can at times almost be as devestating as the disease they are supposed to treat!
And because there are those with brave and strong hearts like Jenny and Jim, who are willing to face the fire and many other tribulations so that others may benefit from thier knowledge and advocacy. Because of this, we are recovering!
And we owe it to you the parents, the teachers, the service aids, and the DAN doctors and the people willing to start alt. meds buisnesses and teach us about the impact of proper nuitrican, diet, and vitamins can have!
Big Pharma is loosing. It can be seen in the backlash against the GMC verdict. Even in the news! Just this morning I was listening to a local radio station, were many parents were being interviewed about why they are opposed to the new 24 mandated vaccines directly after the birth that has just been decided upon.
And the parents are being listened too. And as we on the Spectrum get older, those of us who can speak out are doing so in larger numbers! They can't ignore the results of lives like mine!
They are getting scared, desperate. And in the words used in the Dark Knight after the mafia man pulled a gun on Harvey Dent and he and Rachel were walking down the hallway (It was great that he did that. The fact that they are willing to attempt to murder a public servant in court shows we are getting to them!)
And together, between you the parents and the emerging aspies like me who are speaking against what has happened to us, they will get more desperate, and things will get darker. But the night is darkest just before the dawn. And remember, that means we are winning.
We are getting to them!
Posted by: Darian (nickname) | February 08, 2010 at 10:16 AM
Dear Katie,
I think I have figured this Liane Kuperberg-Carter out. She is a graduate of Brandeis and has her MA from New York University Graduate School of Arts & Sciences. She is a writer and has ties to Allison Singer's organization Autism Science Fondation. She has a connection to Lisa Belkin because on December 23, 2009 Lisa Belkin in her Motherload blog directed people to Liane Kuperberg-Carter piece in the Huffingtonpost.com
http://www.huffingtonpost.com/liane-kupferberg-carter/emthose-kidsem_b_392499.html
Something makes me think these two worked this article out together. Liane Kuperberg-Carter being angry (via her two articles) and Lisa Belkin working for Offitt (via the title of her blog)
I am totally speculating but I think this was a planned hit job.
Posted by: Nora | February 08, 2010 at 01:20 AM
Dear Katie,
Looking at the Times piece, The False Prophets of Autism, (cleverly conjuring up images of Offit's book, Autism's False Prophets).
http://parenting.blogs.nytimes.com/2010/02/02/the-false-prophets-of-autism/
I posted this comment:
In the midst of the disaster called autism, we find a mom angry at Jenny McCarthy. Where is the outrage at the medical community that
shows no alarm over an epidemic of autism and can tell us nothing about why this is happening?
It's taken years for health officials to finally admit that maybe, they're still not exactly sure, but
more kids just might have autism. Still, none of the experts are on the news demanding that we put all our scientific and medical
know-how into stopping autism from affecting more children. Most of the funding still goes into looking for the genes to blame for autism.
Liane Kupferberg Carter writes, "Behavioral therapy still remains the gold standard in treating autism." Trying to reduce or improve the outward signs
of autism is hardly a solution to the disaster afflicting more and more of our children. How bad do the numbers have to get? What's going to happen when the generation of autistic children becomes a generation of disabled adults, dependent on the taxpayers for their support and care and we still have no answers? Will we just keep on producing these children
until no one can remember a world without autism?
Anne Dachel
Media Editor: Age of Autism
Posted by: Anne McElroy Dachel | February 06, 2010 at 06:58 PM
The fact that these ridiculous quotes are featured should show that the biomed side is threatening to the industry. If they really thought that parents wouldn't listen to Jenny because she is a parent and not a doctor and b/c she was in Playboy (God if I see that written one more time - who cares! I mean really - vaccines couldn't possibly cause autism b/c Jenny was in Playboy?!), they wouldn't feel the need to add the Amanda Peets to go against the Jennys and the Ms. Carters to go against the Stagmoms out there - parents aren't listening to their crotchety old doctors and rich vaccine inventors. But we aren't going to listen to ill informed parents and celebrities either! The fact that they are even trying should say something though - they are getting worried. This isn't going away. Our kids are getting better and that's what parents are going to listen to!
Posted by: Joanna | February 05, 2010 at 02:10 PM
How has this debate become so insane? Wakefield is a brilliant surgeon. Jenny is a savvy mom making a reasonable argument in defense of an effective strategy that is actually getting kids better. Why such an intense backlash from the opposition?
Because the Paul Offits (and the docs who feverishly debated Kim and Mark Blaxill) represent a dying and deeply threatened medical system. Our message of recovery is so intimidating to them because inherent in it is some finger pointing at two of the biggest money making aspects of their pharmaceutically-dominated medical model: vaccines and the drugs recently approved to treat autism. Make no mistake, that the kids, Wakefield and Jenny are all sacrificial lambs at the altar of this well funded, profit obsessed giant! But the more we support each other in the healing of more and more kids and work at our own grassroots propaganda machine, the quicker the demise of this outdated, ineffective drug based system will be.
Posted by: Maureen H. McDonnell, RN | February 05, 2010 at 11:32 AM
I hate this give up mentality so many have! I read such an article and what I here is "I'm sorry, your child is F*&($@, there is nothing we can do about it. Nothing you can do about it. Just accept they will never have any kind of life, and neither will you."
Really? Explain my nice apartment, my excellent relationship with my relatives, and loving relationship with my wonderful better half, and having a great job then!! Because I am on the Spectrum! But I didn't consider it a death sentence!
I worked hard with the proper supports day after day after day, with much blood sweat and tears to get where I am. And I can tell you, it wasn't big pharma that helped me suceed! It was my warriar mama and me!
We do not accept this autism! We will not lay down our swords just because you tell us it's impossible to win! Nothing is impossible!
On a side note, I was put on aderal at a pretty early age. And I had high anxiety, rapid heart beat, stomach problems, etc. I went off of it due to money issues. I started taking St. John's Wart for anxiety and Ginko Biloboa to help me concentrate and we are talking dramtic difference!!
I'll stick to my herbs and hard work and advocacy, I won't stick my head in the mud, and niether will anyone else here. There is entirely to much at stake for that!
Posted by: Darian (nickname) | February 05, 2010 at 10:54 AM
The parents that I meet who bash people like Jenny (and other biomed parents) are almost ALWAYS ones who are too damn lazy to try biomed or made some lame attempt at it. Their kids are almost ALWAYS on heavy duty psych meds which just makes them worse and FAT! These parents are not only bitter but are jealous and deep down are well aware that they should have done or should be doing more.
I also notice that these are the same parents who complain about the cost of biomed and DAN doctors yet have no problem at all spending money on new cars, expensive houses and lots of vacations. One such mom dumps her kid in a camp where the counselors have no clue and babysit all so the mom can take never ending vacations that she claims are deserved since her life is soooo stressful. These parents are selfish and in the end they will pay the price when they are sitting at home with a 250 lb. 21 year old with no one willing to babysit then! Good luck to these clueless parents.
Posted by: HDG | February 05, 2010 at 08:48 AM
"The trouble with truth is - even after it has been dismissed again and again and again it just keeps coming back around."
Thank you, Benedetta for my FB status today. How very true!
Posted by: Nicole | February 05, 2010 at 08:24 AM
I think some may have missed the nifty post from Offit's Flying Monkey showing us that
Lisa Kupferberg Carter is on the Face Book Fan page.."PAUL OFFIT SAVES LIVES".
Now why is it that all of the bashing, angry ,"I did biomed and my kid got no better", vocal, NYT-worthy, parents, always end up connected to Paul Offit somehow?
Sounds a bit suspect and makes me wonder about the truth of this NYT article.
Posted by: Teresa Conrick | February 05, 2010 at 01:20 AM
Great article Katie. Pharma is on a roll lately. They would love to shut recovery down because you aren't supposed to be able to heal a genetic condition. SHHH. Don't tell anyone.
The problem with that is that thousands of parents including myself see their kids getting better every day. My daughter is making her therapists jaws drop almost every week. A month ago they said she did not qualify to use an augmentive communication device. This month she has 6 functional words and said her first sentence.
They can not un ring a bell.
I also think that Ms. Carter is bitter. It makes her feel better to think healing is not possible.
Early intervention is not the gold standard. We spend every penny on our daughter and it is worth it. I have no regrets.
Posted by: recoveringchloe | February 04, 2010 at 10:39 PM
The trouble with truth is - even after it has been dismissed again and again and again it just keeps coming back around.
Now how long the truth can be dismissed?
with determination and enough money apparently a very long time.
Posted by: Benedetta | February 04, 2010 at 10:26 PM
Great job Katie!! We all need to recognize that one size doesn't fit all in helping our kids either. But no one should be bitter about it. If someone is able to get their child to progress by a method that didn't work for mine, I am not angry at them.; I'm thrilled for them. Ms. Carter needs to take a look at herself in the mirror and decide if she wants to waste her energy on being angry, or use it to try another approach. I know what I would do, and so do a lot of us other MOMS.
Posted by: Jennifer | February 04, 2010 at 09:49 PM
I love you Jenny! I was a dumb parent blindly following my peds advice... then I happened to see Jenny on Oprah and I'll be damned if she didn't make sense... I went after it like a fat kid on cake.
Now my son is recovered, no longer qualifies for early intevention and no longer on ANY rx meds... I thank Jenny.
She isn't the only hard working parent busting thier ass to help each other-- put she uses her powers for good and not evil.
She opened the door, and inside was a wonderful community of open minded parents, like Katie, willing to continue to carry the message.
We just gotta keep the message going...
Posted by: casey | February 04, 2010 at 09:29 PM
I am right with you Katie. My experience has been that the only people who have negative things to say about Jenny are either people with a direct or indirectly vested interest in vaccines (Pauly Profit et al and/or the peds who used the just following orders defense) or parents who want to justify why they don't do anything.
People who have no direct experience w/ autism usually tell me that think she is right and incredibly smart even before I tell them I agree!
I give her book to all new mothers that I know. Wish I would have had it. When I read about autism parents ripping her I think back to when I saw her at autismone a few years back and she said something along the lines of instead of following the people who say my kid is too messed up, my dr says it is bs, it is too hard, expensive etc. - you should follow the example of the parents who are trying things and getting results. Keep looking. I found great comfort in those words and it keeps me fired up when I feel frustrated with the two steps forward and twenty back. For the sake of my daughter I will follow the lead of Jenny and the parents like her instead of Ms. Carter.
Posted by: JulieC | February 04, 2010 at 07:47 PM
My god, if Early Intervention is the "gold standard" for autism treatment, we are in a sorry state. We did the EI thing for 18 months with next to zero improvement in any way, shape or form.
My ASD non-verbal 18 month old went to being an ASD non-verbal 3 year old.
Chelation began when he was 3.5 years old, and he began speaking in 6 weeks.
Gold standard? Bah.
Posted by: Jessica | February 04, 2010 at 07:24 PM
The blame comes because Jenny's son being recovered and Jenny's insistance recovery is possible eats at her.
Deep down she wonders, What did she do differently? What could, would and should I have done differently? Why didn't my son recover?
As if Autism is not full of enough stress, guilt and regret, the pressure one feels to recover his/her child is added to it. The idea that you could have done something differently to change the situation eats at the very fiber of your being. Even with the tremendous recovery we've had so far, there isn't a day that goes by I don't wonder if we would have experienced a complete recovery had I started earlier, gone to a different doctor first, been more diligent about the dietfrom the beginning, gotten better services and so forth. The list goes on.
At the end of the day, I just have to surrender to the fact I did the best I could. For some people, lashing out at those of who make them feel badly about what they did or did not do is the way they deal.
None of us should have to experience this guilt, but it is the reality. I dream of the day when a hospital much like St. Jude's exists for all kids and all families at no cost to go for every kind of treatment possible with the best experts in the field so that none of us have to waste a moment or a thought on what we could have done faster, better or differently...other than having to have been there in the first place.
Some day, right?
Posted by: Julie Obradovic | February 04, 2010 at 04:51 PM
There is no "gold standard" for treating every child who has autism. All kids with autism are different and therefore, they all respond differently to different kinds of treatment.
I have no regrets about doing biomed, ABA and EI all at the same time when my son was younger. For us, I would say EI offered the chance for my son how to be included with typical children. But it did not help with behaviors or the gastrointestinal issues.
As for Jenny McCarthy, I believe she is extremely courageous for putting herself out there and trying to help so many parents who are at a loss as to what to do when their child is diagnosed. She helped bring awareness to the autism issue in a very public and personal way. Parents should be grateful for what she has done for autism awareless regardless of whether they have chosen biomed for their children.
Parents should also be grateful for her relentless efforts to help "green vaccines". There may come a day when we look back and say, "Remember the day when we put aluminum and formaldahyde in vaccines". And if that day comes, Jenny McCarthy will be remembered as a parent warrier who fought and won to make vaccines safer for all children in this country.
Most importantly, people should remember that autism treatment options such as ABA, medications or biomed are personal decisions for parents and their children. Parents should have the choice to do the research and choose which autism treatment is best for their own child. There are many more shades of gray when it comes to autism and autism treatment than just black and white.
~Kym
www.AutismInRealLife.com
Posted by: Kym Grosso | February 04, 2010 at 02:03 PM
When you see a new name repeating the talking points of the CDC/Offit's public relations team, scroll through the FB friend list of PAUL OFFIT SAVES LIVES, the Flying Monkey castle.
Ms. Carter, there you are.
Posted by: Offit's Flying Monkeys | February 04, 2010 at 12:44 PM
I found the NYT comments section interesting - talk about echo chambers!
Maybe when mainstream medicine comes up with real solutions, and prevention, people will listen again.
Maybe when we stop noticing every other ad on TV is a drug ad, we'll stop worrying about conflicts of interest.
Maybe when the vaccine schedule resembles something a little closer to what we received as kids, we won't be quite as worried about our kids' safety and health.
And we're not all autism parents (I'm not). My child has debilitating allergies and fairly severe visual processing problems (90's shots filled with thimerosal, HebB on Day 2). My nephew has Type 1 diabetes at age 6 (no, he's not fat or a couch potato - quite the opposite). My other nephew (different sib) has severe asthma. The older the grandkids are in my family, the healthier they are (Hep B admin changed during those years in the 90's). And there is not a big "swing" in their ages (11 years).
The new normal is NOT normal. Sane, thinking parents know it! COME ON! WE ARE NOT STUPID!
Posted by: Parent | February 04, 2010 at 12:39 PM
I've been reading "The Power to Change Everything" lately by Yehuda Berg and many things he highlights ring true. Particulary how the Ego plays a role in choices and how the ego is the voice inside us that triggers judgment, control, anger, pride and even hatred.
I have stuggled for a while trying to figure out how people can hate and condemn those of us who choose means (mostly naturally) to help our children be more comfortable in this world - while at the same time these folks are using pharmaceuticals to mask those same symptoms. Why should they care? Why are they so offended? Well, it may be their egos telling them that everything is black or white, right or wrong.
In the end, I only have control over my own ego and the choices I make for my family. I let the results speak for themselves.
Posted by: Amy in Idaho | February 04, 2010 at 12:23 PM
Right on Katie!
During A1 last year, I had to "defend" Jenny to a couple at dinner (I was invited to dinner by a mutual friend) who were "offended" by her language and representation of our community.
Of course as I "dug" further, what REALLY bugged them was the fact that THEY had worked for years on this issue (starting a school in Michigan) and they weren't getting the "recognition" they deserved! Everyone thought Jenny had "started" the movement!
My response: Suck it up. I've worked for YEARS on this issue (on my own dime to boot) and I think JENNY MCCARTHY coming on the scene was and IS thee best thing that has ever happened to GET THE MESSAGE OUT TO THE MASSES! In other words, PROTECTING CHILDREN is the goal here -- not your EGOS!
BTW: I left the table after making my point -- albeit after enjoying the chips and salsa ;-)
Posted by: Kelli Ann Davis | February 04, 2010 at 12:08 PM
I read some of the comments at the NYT blog and felt like I was witnessing a public beating.. everyone was getting their kicks and punches in.. hope it makes them feel better...
I think Jenny's a good person, she cares about the kids and whether you agree with her or not, she's raised awareness about autism.
So why are parents following the advice of someone with no medical license?
For me it's because I feel we are getting no medical help for our kids despite a host of medical problems.. the medical community looks at behaviors, slaps label on our kids and writes them off as untreatable.. The standard line is "get him/her into therapy"
So, where are we to turn when our kid has chronic diarrhea, poor eating habits, hormonal imbalances, inflammation or extreme sensory sensivity?
We parents try to get help from the medical community but the minute they hear the dx we get rebuffed. It's like "your kid has autism, suck it up"
I brought my son to an ENT doctor at Mass Eye and Ear b/c he was contantly holding his ears at home and in school.
I specifically said to them "I'm not here because of his diagnosis, I'm here because I think he has a real problem with his ears-- I think he's in pain".
Her response: "well, he's autistic, this is typical"...
(yeah, no sh-- Sherlock)..argghh!
Posted by: Sarah | February 04, 2010 at 11:36 AM
You know what? I think if the Almighty God were to appear in my kitchen and sit me down to tell me a few things, I'm sure at one point in the visit I would open my big mouth to start an argument. As much as I love and worship my absolutely brilliant wife we spend a few hours a week arguing about one thing or another. I'm serious, she is the brains behind all of Ben's progress and yet I argue.
Isn't that what people do? What we don't do is print such harsh critisism in newspapers without allowing equal time. Otherwise this is a hack piece (even though it is a blog opinion).
BTW the name of the woman with the big burr up her butt is Laine Kupferberg Carter, and Ms. Carter has been quite opinionated before, somethings I can agree with and some I can't.
Here's the link
http://parenting.blogs.nytimes.com/2010/02/02/the-false-prophets-of-autism/
Posted by: bensmyson | February 04, 2010 at 11:30 AM
Ms. Carter and other parents like her are clearly bitter. She blames biomed and all DAN doctors because she happened upon a bad one? Guess what Ms. Carter? Many parents have great DAN doctors and have had a lot of success with the treaments. Just because you didn't doesn't mean the rest of us should take on your attitude. Talk about self absorbed. Think the world revoles around you too Ms. Carter?
Maybe she should team up with that appalling Alison Singer. She has made a career out of bashing parents who have had success with these treaments.
Get a life Ms. Carter. No one really cares if you're an unhappy, bitter autism mom.
Posted by: Sammy | February 04, 2010 at 11:24 AM
@Ana B - YES! GO! E.H. I'm rooting for you! R
Posted by: not a sheeple | February 04, 2010 at 11:18 AM
Regarding medical advice. I'll listen to any medical advice anyone wants to give me. It is up to me and my wife to filter that advice to determine what is correct for our child. That is true whether the advice comes from a doctor, a parent, a book, or anyone. We learned that the hard way, just as every autism parent has.
I no longer give credibility to mainstream doctors when it comes to autism, the causes of autism, or how to treat autism. Most are worse than idiots on the issue, and are they themselves causing this plague by their willful ignorance.
I welcome ALL medical advice that ANY autism parent will share with me. My wife and I then decide whether we should try such an approach with our child. We know our child's symptoms and how he has responded to various supplements in the past.
We have 1 rule, "DO NO HARM," a rule that most doctors have forgotten with respect to any product, such as vaccines, that they can make a buck on and not be held accountable for the damage done.
Where would we be if we weren't sharing "medical advice" by word of mouth amongst parents by phone and via the Web. The Georgetown University Hospital doctor who gave us our "diagnosis" told us there were no tests or anything he could do for our son.
As a result, we wasted a year on speech and occupational therapy, without biomedical intervention, that did not help AT ALL. It was not until word came to us through people like Jenny, that we realized we should even look into biomedical treatments.
Our son was sliding downhill fast. Only after biomedical interventions targeting his gut issues (identified with tests that the Doctors at Georgetown University Hospital said did not exist)did we arrest the fall and start improving medically, in the form of increased eye contact, reduced temper, improved socialization, etc., Only then did we see speech and other therapies start to make a difference.
Regarding Jenny, one of the supplements that we continue to give my boy, and which got him off one of his few pharmaceuticals came from one of Jenny's books. I will ALWAYS be thankful to Jenny for just that one bit of assistance (which is just the tip of the iceberg with respect to what she has done to bring awareness and attention to our plight), as I am to every parent and DAN! doctor that has provided any level of concern and/or advice and has thereby contributed to our son's continued improvement.
Remember, the people who targeted Andy Wakefield and who are gloating in the corrupt ruling from the "Mother Country" are the tyrants which must be overthrown.
Jenny is a true patriot.
Posted by: John Hemenway | February 04, 2010 at 11:14 AM
Kupferberg Carter did attribute the word "cure" to Jenny McCarthy. It wasn't in quotes because she knows perfectly well she could have been sued for it; Jenny never says the word in terms of her son, except to negate it. She's said that you can't be "cured" from being hit by a truck, but that her son is "recovered" in terms of no longer having the diagnosis.
And how sad for all of us that this is true. None of our children will EVER be exactly who they were meant to be if they hadn't been unnecessarily, toxically, iatrogenically, environmentally assaulted. We all have to live with that no matter how far we're able to bring our kids. But the offense of creating the "cure" straw man to knock it down is not an attack on us so much as our children. I imagine Brian Deer-esque reporters waylaying recovered kids after school or catching up with them as adults: "Hey, I thought you were 'cured'. But you still stutter, your eyelids still droop, you talk a little weird. You're not 'cured'! Your parents lied! You're still not totally normal!"
How much these people forget that there are real people that are being discussed here-- our children. How confident they are that these children never will be full people who may one day be *recovered* enough to retort, fire back, blow whistles, write memoirs and take an accounting of who played what role in the epidemic.
Posted by: Gatogorra | February 04, 2010 at 11:09 AM
Hear,Hear!
Posted by: KP Stoller, MD, FACHM | February 04, 2010 at 11:03 AM
Thank you, Katie. Eloquent as always.
Posted by: Erik Nanstiel | February 04, 2010 at 10:40 AM
msb, the fact of the matter is Jenny has seen many children who do have fungal issues and also many children who have recovered. You are right that we don't know how our children would have been had they not been vaccine damaged, but that is not what recovery is. Recovery means recovering from your injuries/disease. If a child cannot speak before biomed and can during and/or afterwards, he is recovered from that part of ASD. If a child has diarrhea or constipation and no longer has those issues with biomed, he is recovered from those things too. Does that make sense?
Because of her celebrity, Jenny has done more for our cause than anyone else, so I don't appreciate anyone nit-picking her. There are still many many parents out there who need to hear what she has to say.
So she recommends an anti-fungal by name -- if an anti-fungal helps a lot of children that she has personally seen, why shouldn't she pass that on? She isn't recommending psychiatric meds. There are some prescription medicines out there that are beneficial four our children.
Posted by: A Mom | February 04, 2010 at 10:24 AM
@Lisa Belkin. I agree, the number of kids who are entirely recovered is probably actually pretty small. When I watch the recovered Autistic children (ARI) videos on You Tube I'm always thinking, "doesn't anyone besides me see these kids have Aspergers?" That doesn't mean they are not remarkable, especially considered many of these kids were once severely Autistic and banging their heads into the floor, but it is not total recovery. Maybe sometimes, but most times, from what I see, they still have traits.
Posted by: AnaB | February 04, 2010 at 10:23 AM
There are a lot of neurotypical sibs in America right now, watching their medical ill Autistic sibbling suffer and sold out by the mainstream medical community and science. Some of them, mark my words, will be inspired by this to careers in medicine and science. They will do the research because it is right, and will not back down because of threats to their careers because they are serving a greater purpose. It is coming. Take heart.
Posted by: AnaB | February 04, 2010 at 10:19 AM
When is this blame game ever going to stop?! So you don't agree with Jenny McCarthy. BIG DEAL!! She is not forcing anyone to choose the path she did! She is simply offering an alternative, one that has worked for her! That is no reason to spray all venom in her direction!!
Or in the direction of other parents who choose biomed! Since when is a healthy diet and taking vitamins bad anyway? I was always taught that autistic or not, vitamins are GOOD FOR YOU!! THey build up the immune system.
This ripping each other's throats out really has got to stop! When are we ever going to agree to disagree and finally come back to the table again and work together on the Common Goals we all want for those with ASDs?
A house devided can not stand! People need to stop blaming and start trying. To calm down and sit back at the table! For our sake!! Please, NDs, I know how passionate you are about your side, as we our passionate about ours. That is no reason why we can't work together for common goals, and agree to disagree on others!
I beg you, think about it! Because millions of lives are at stake!!
And like my dad used to say "Don't knock it till you try it."
Posted by: Darian (nickname) | February 04, 2010 at 09:54 AM
In fairness to Jenny, and the term "recover", she doesn't use it as synonymous with healed. She always states that these children are damaged and they will not be as they would have been had they not been injured. BUT they can reach a point where they are indistinguishable from their peers.
I haven't experienced it yet with my children, but I would never use my experience to say that recovery can't happen.
In the same way we fight to be believed that our children were once typical and something caused this change, we should believe other parents if they state their children are recovered.
As for Jenny giving a specific prescription name as part of biomed suggestions, I agree that it's dangerous for her to do so. Not so much that the medicine is probably that dangerous in and of itself (as long as proper testing is done along with treatment), but because we live in a litigeous society and I worry that some parent will sue the pants off her and ruin it for everyone.
I'm a rescue angel. When I give advice and recommendations to parents I always add caveats such as "do your own research" and "find a doctor to help you with this". In the end though, the responsibility for doing biomed safely and properly lies with the parent.
No one is going to care as much as the parent does. I think some parents are angry and confused about this, after being told all their lives to trust the experts. I think that anger and confusion sometimes gets aimed at the wrong target. In this case I think that target was Jenny, and that's a shame because her voice has helped so many.
Posted by: Kim Davis | February 04, 2010 at 09:41 AM
I read Lisa Belkin's story first thing yesterday morning and my initial reaction was defensive (my son has done very well with diet and holistic biomedical therapies), but she is right about one thing - Jenny should not be giving parents medical advice. For 2 years now, I have stood in the packed AutismOne main hall and listened to her (and the boring SLP presentation) tell parents both appropriate and inappropriate advice. For 2 years, I have walked away with a pit in my stomach because she always recommends antifungals (and if I am not mistaken, the actual drug names- someone feel free to fact-check me). She should not be doing this - she doesn't have a medical license. I was initially thrilled when she wrote her first book and came out for our community, but someone needs to tell her to stop giving medical advice. I am intentionally not going to the main conference this year because I tired of seeing her and her crew. I will go to the preconference days and listen to safe alternatives from natauropaths and homeopaths - this works for me.
Also, all of us (including Jenny) need to get away from this idea of "recovery" - after doing biomedical and behavioral therapies for 6 years, I have never seen a child recover - they all still have characteristics. We can't say "recover" because we don't know how the child would have developed if he or she wasn't vaccinated. We need to using the terms like "healthy and thriving" because if they are, then they can benefit from behavioral therapies and do extremely well (my son no longer requires the specialized autism services at his school, but by no means is he typical). In Connecticut, most insurance companies are now covering ABA and my worry is that parents are going to jump right in it without cleaning up the gut with diet and safe/effective natural therapies. It's just not appropriate or beneficial to the child to force them through ABA (many times giving rewards full of casein and gluten, adding further damage) while they are still sick with GI issues.
Jenny, please take a step back and stick to what you know, the everyday challenges of being the mom of a child with ASD.
Katie, thanks for writing this piece - I was looking for a post on it - NY Times is not fair and balanced.
Posted by: msb | February 04, 2010 at 09:04 AM
BINGO, Katie.
Good job... :)
Posted by: A Friend | February 04, 2010 at 08:41 AM
I'm sure we'll be seeing more of "those" parent testimonials crucifying all that you mentioned and more. All part of the media blitz to attempt to put the autism vaccine issue "to bed". Like that is ever going to happen.
Jenny McCarthy learned from other experienced parents who told her what happened to their kids and what they did to help their kids. They got her networking "of her own free will" I might add. She actually credit the parents who did this in her first book on autism.
She's famous- people are interested in her and Evan's story becasue of that. She's not unique in what she has done to help her child. Why be mad at Jenny? She's just another mom telling her story. If you don't like it- don't listen. But, even if you choose not to listen doesn't mean others will do the same.
Passionate mom's talking about their ill children with autism and what they did to help them is so much more compelling than TV doctors, or millionaires who got they way from vaccines- screaming "vaccines are safe".
Posted by: Andrea | February 04, 2010 at 06:59 AM