Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it”

14 Jun

Jenny McCarthy is the head of Generation Rescue, a charity which promotes the idea that there is an epidemic of autism caused by vaccines. Ms. McCarthy has been the keynote speaker at the AutismOne conference (which is now co-hosted by Generation Rescue) every year for the past five years.

At this year’s AutismOne keynote, she spoke about the difference between the parents who use alternative medicine on their children (“Warrior Moms”) and those who don’t (“Victim Moms”). Here is the video. At about seven minutes in she talks about the moms who “fall into this victim role, and they like it”

“They didn’t get attention in their lives and then this incredible door opens…and they’re loving it”

This isn’t a new message for her. In her first book (Louder than Words) she’s had a similar message. From Louder than Words:

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.

The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.

And, later…

“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.

For this observer, this is some combination of sales-pitch/motivational-speaker. Ironically, Ms. McCarthy’s followers like to portray themselves as non-judgmental.

An Autism Dad takes on this “victim” vs. “warrior” stance Jenny McCarthy creates in A Note to Jenny McCarthy

Jenny McCarthy has been back in the news lately. Partly because she’s going to do another photo shoot for Playboy. The reason? To make money to help pay for her son’s school. I’ve seen reports that she told people at AutismOne that the tuition is $3,000/month, and Howard Stern that it is over $100,000 per year.

I wish that kid all the best. I wish him well. I also wish that perhaps when people throw out terms like “recovered” and “no longer autistic” to promote the vaccine-hypothesis and alternative therapies, that those people would give more details about how far “recovered” is from “cured”.

Here’s how she characterized her son’s recovery on the Larry King Live show

MCCARTHY: A lot of these kids have Candida, which is yeast — overgrowth of yeast. By giving them anti-fungals, like Diflucan. After I cleaned out Evan’s Candida — and I’m going to say this very clearly — he became typical. He started speaking completely. His social development was back on. He’s now in a typical school. He got that much better. And my story is not alone. I have — recoveryvideos.com, by the way, has pictures and stories.

In 2007, her son “became typical” and now he needs a $100,000+/year special school? I wish him well. I also wish that there was more transparency and accurate information from his mother.

Perhaps she could drop the victim mom/warrior mom schtick and give us honest mom.

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71 Responses to “Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it””

  1. James June 14, 2012 at 07:51 #

    Honest mum? Never. She’s got too much personal and financial capital in it. Though I’d weigh much more on the personal capital. Its far more of a face saving exercise to keep going with it (though I suppose she could just be that daft that she believes it sincerly ofc… I mean anyone who thinks ‘how do I promote autism… hey stripping sounds like a great idea that really gets the message across!!! is qustionable at the face of it. Have Polly Tommey at one point in the UK who took her top off for a billboard campaign and got to discuss policy with government advisors… god there arent words to describe how vile I feel all that is). She can’t possibly back down now.

    But yea ‘supposedly’ her child never had autism but something else that just induced seizures so hey ho the poster child of the autisim movement had a low bar effectively for Mccarthy to profit off. Really feel for the kid takes strength to endure against those odds though I doubt he’ll ever realise with what he’s been fed about him being a broken child that hes lucky to have mummy there to fix and show off for pity.

    I find the ‘victim mums’ thing pretty laughable because thats how I view the generation rescue/autism speaks side. They can’t raise a penny without a doom and gloom video where ‘anything and everything’ even lying and intimidation is the order of the day. They have to control the autism community for mums. I don’t doubt that the severely autistic kids may be in need of a ‘cure’. But lets face it at the moment they get lost between the two camps, one the quack side in mccarthy’s faction who exist to make profit, promote non-autistic families as the ‘brave soliders who suffer their broken children’ for profit of all their unchecked ‘cures’ (you’d think ofr something that openyl wants higher standards in the pharma industry it’d actually practice what it preached). On the other hand you have neurodiversity which in my view has some good points but sadly because of the butting heads with mccarthys faction to even get a voice I think theres a real danger of the really really severely autistic kids getting left out. Sad but true but the ‘brave mothers’ (or family but its generally the ‘warrior mom’ narrative) really drowns out anything useful because some narcassitic people just want to be viewed as heros to stroke their egos.

  2. seventhvoice June 14, 2012 at 09:47 #

    OMG….. Victim Mothers….. does this woman not get that the biggest problem parent’s of children with autism face are the ignorant attitudes of others. I have yet to meet a mother who hasn’t done her best to increase her own knowledge and understanding of autism on behalf of her child…… We may not all agree on the causes or the treatments of autism but we do in general agree that our children require love, support and understanding…. I think it’s about time we added that mantra to include the things that parent’s of children with autism also most need…. It saddens me that such division and derision has become a part of the autism parenting landscape…..

  3. psychtld June 14, 2012 at 09:56 #

    Jenny and her type are costing me a shitload in busted irony meters….. :/

  4. futuredave5 June 14, 2012 at 11:12 #

    Generally speaking, making up motives for other people is a bad argument. Jenny claims that I disagree with her because I want to play the victim. However, since she can’t read minds, she really has no idea what my motives are.

    Financial motives, on the other hand, are usually fair game. If she makes money by selling snake oil, then anyone who buys her product has the right to question her financial conflicts.

    $3,000 a month is about what it costs for ABA therapy. I wonder if the school is secretly using some evidence-based treatment. That would be a great new chapter for her next book.

    • Sunshine June 14, 2012 at 16:48 #

      She has spoken pretty openly about ABA therapy in the past and Evan definitely has received it.

  5. Alisis June 14, 2012 at 17:05 #

    How can you said something Like that!!!!!
    Your son Autism is mild very mild if he has it!!!!
    Do you want to see my son, stemmin all the time and making noises, running.
    You only have him plus a lot of money
    I have 3 boys, And me and my husband have to work full time,
    So please think before you to talk!!!

  6. themommypsychologist June 14, 2012 at 17:52 #

    Ugh….Don’t even get me started on Jenny McCarthy. As a psychologist and a mom, she infuriates me with the wealth of misinformation that she presents. And now she’s posing for Playboy? Give me a break! Autism expert and playboy playmate just don’t work well together. I talk about it more here: http://www.themommypsychologist.com/2012/05/19/can-you-guess-which-autism-expert-is-posing-for-playboy/

  7. Squillo (@Confutata) June 14, 2012 at 18:03 #

    Irony much?

    It isn’t the science-oriented parents (or autistics themselves) who paint themselves as victims. My kid’s autism is a simple, biological fact, like his buck teeth and brown eyes. I don’t need to blame anyone for it, and I certainly don’t spend my time wailing about how hard he makes my life–he makes my life much better, and his autism has little to do with that. And I don’t chase down every crackpot cure sold by some snake-oil salesman in hopes of fixing my kid who was ”broken” by the nefarious activities of the Big Pharma-AAP-ACIP cabal.

    So no, I’m not a ”victim mom.” And I’m not a ”warrior mom” either. Too many of them seem to be as much at war with their children as they are with whatever windmills they like to tilt at. I’m just a mom trying to meet both my children’s needs as best I can.

  8. Liz Ditz (@lizditz) June 14, 2012 at 19:34 #

    I thought I’d put a link to This Side of Typical’s response. Warning: lots of cursing.

    http://thissideoftypical.com/2012/06/14/mean-girl/

    You wanna know why there isn’t enough research into causes and treatments? BECAUSE OF NONSENSE LIKE YOURS. People outside the autism community look at us and think we’re a bunch of kooks who can’t agree on a goddamn thing because of the divisiveness YOU have created. Because of your fear-mongering. Because of your stupid accusations.

    • autismjungle June 16, 2012 at 20:57 #

      I read it. Not enough swearing if you ask me.

      • Liz Ditz (@lizditz) June 20, 2012 at 22:32 #

        Autismjungle, I have this policy of trying not to curse in print or electrons. I try to use cold, critical politesse instead. But McCarthy is worthy of swearing.

  9. monkeybrainsaspie June 14, 2012 at 20:19 #

    She sickens me. And she is doing a LOT of harm.

  10. Nalafeina June 15, 2012 at 03:55 #

    I don’t use any medications on my child. He’s my son, and I don’t want to change him. I also NEVER play the victim. I don’t bring up his autism because I prefer that he doesn’t get labeled. He’s Jonathan. He’s my son. He wants to be an astronomer. He is my whole world. He makes me laugh, he makes me cry, he makes my heart sing with joy at every accomplishment. I am not a victim. I am the mother of an amazing child who happens to do things a little differently. I marvel in his way of seeing the world. I enjoy learning through his eyes. How does not using alternative medicine on my son make me a victim? I am not a victim. I am a loving and accepting mother. I don’t have pity parties. Why should I? He is who he is, and what he is is perfection in my eyes. I know adults with autism, and they don’t want to be cured. I need to respect that, and I need to respect and accept my son. How can I say I love him if I don’t love who he is? He was non-verbal for a long time. Then we bought him a pet and he began talking. You should have a conversation with him! It’s amazing! He is blunt, and he will give it to you straight. He doesn’t beat around the bush or use subtleties. Do you want to know how that dress REALLY looks on you? Ask him. You want to know the names and sizes of all of Jupiter’s moons? Ask him. So who is the victim? Not me. And certainly not him. The only victims are those who listen to Ms. McCarthy and the rubbish she’s spewing. Stop with all the nonsense and media. Walk away from it all and walk toward your child. They need your love and understanding, and most of all your acceptance.

  11. Kibblet (@Kibblet) June 15, 2012 at 16:42 #

    Anyone who goes on about “I don’t need this” and “oooh doom and gloom is bad” and “just accept them” should be damn thankful they don’t know WHY some of us want a cure. Now, I think McCarthy is full of it, but I am so sick of the idiots who think autism is no big deal. It’s hell for my son and it is hell for my family, and I would give anything, ANYTHING for a cure.

    • KarlaAkins June 15, 2012 at 17:27 #

      I concur.

    • Sullivan June 15, 2012 at 18:24 #

      Kibblet,

      Is there anyone who thinks autism is “no big deal”? There is a huge straw-man argument behind the idea that people who oppose fake therapies which have potential for harm (e.g. MMS) don’t see autism as a big deal. There is a false argument that people (autistics and allies) who feel that autistics should be accepted do not feel that autistics need a great deal of support.

      One of the things that bothers me is the use of epithets based on intellectual disability. “Idiot” is an old term for a person with significant intellectual disability. Even with out that, you are effectively using “He has low intelligence” as an insult. There is no shame and nothing bad about being intellectually disabled. It is a major challenge. Why use that as an insult? All it does is make it harder for people like my kid to get respect.

      I would not give up my kid’s dignity for a cure. I would not give up my kid’s identity for a cure. But before we go too far into that discussion, what cure? The one that takes a kid and calls him “typical” when he has significant disability (epilepsy) and who knows what else that requires a school which is expensive–even for a special education private placement?

      Yeah, “doom and gloom” is bad. When people, parents of disabled children, denigrate the intellectually disabled it is bad.

      I’ll tell you something. My kid is worth a million Jenny McCarthys. Intellectual disability doesn’t impact that at all. Don’t use my kid’s disability as an insult. The general population is ignorant of the harm they are doing with this type of language. You should know better.

      • Joyce June 21, 2012 at 05:07 #

        Jenny there’s a reason your book is on the clearance rack at Barnes & noble. Do us all a favor who have been parenting these kids for a lot longer than you–sit down and put a cork in it. Please. Why don’t you do some charity work for one of the autism service organizations that help families instead of telling everyone what you think they are and what they should be doing. Get it together.

    • James June 15, 2012 at 19:58 #

      Kibblet

      I would agree that the most severely affected autistic individuals do need help. I’m not sure ‘cure’ is really apt because when we get to the levels of brain comprehension I imagine will be needed I think we’ll be getting near the territory of severe effects concerns. But that kind of stuff is inevitable I mean if you wanted to pull the same scare tactics that groups like Age of Autism did things like research into thought controlled prosthetics might have other sinister applications. But all research is just to broaden our understanding and how we deal with it will be the fundamental test we’re based on. So I don’t disagree with some autistic research the way ASAN does.

      That being said the narrative among parents is sadly controlled by Jenny Mccarthy and groups with her view on it. Its all scare tacticsi and ‘broken’ children. Autisim as a spectrum disorder is only acknowledged rhetorically but its an inconvenience that hurts the narrative so is commonly put aside.

      I can only guess from the strength of your feeling in your post that your child is very severely autistic? As far as I’m concerned while I agree to a degree with the ASAN narrative (though I would also put some emphasis on considering what kind fo social norms autisitic people are failing perhaps we shouldnt handwave over ‘acceptance’ would be also) I think they are far more amenable to care and cause and cure for severely affected than the general parental movement is in considering all the angels.

      The whole situation has a lot of shades of grey. And while I am certain that whatever the outcome (though I expect true and proper research will still take some time and woo will sadly persist in the meantime) severely autistic people will be ‘cured’ to a degree. My fear is that the anti-vax fear narrative is bought to such a degree that we take a one-size fits all apprach to brain development where anything caught is just ‘nipped in the bud’ regardless of psosible ‘severeity’. And where we are in talking about brain chemistry… that will never stop at ‘just autism’. When we can cure autism… we will think about other ‘disorders’ which may well be just personality defects and attempt to ‘cure’ them to. Sure maybe I’m being a bit of a paranoid scaremonger myself at the moment but I think its important that we temper our views and engage this properly so that the needs of everyone is addressed. And in my view the popularity of the currently extreme parental narrative is worrying and not only hurting children with all the ‘treatments’ that they espouse but don’t bother to test (wow hypocrits much considering their crying over ‘big bad pharma) but dangerous for the future.

      I apologies if this is difficult to read. I can’t actually check what i’m typing because ever time i scroll down the window pops back to the top so I can only hope this is readable.

  12. Sheila Carney Damron June 16, 2012 at 13:24 #

    Biomed helps with the brain manifestations of autism, not just the physical. Zinc helps with language and calming. melatonin helps with sleep. Treating yeast helps with violent and aggressive behaviors. colostrum helps with immune system function. Magnesium and baking soda also have calming properties.

    It’s also helpful to point out the Jenny is simply the spokesperson for an organization started by Doctors whose children had autism. They were determined to find research that pointed to ways to improve the behaviors of autism. The ideas and insights of the organization actually come from those doctors, she’s just helping to get the word out. If you want a less divisive organization that is doing similar things, I’d point you to tacanow.org.

    My child is one who has gone from severely autistic to mainstream public school in three years with ABA therapy and Biomed. He has had all his vaccines. He has had no medications outside of Zyrtec for allergies. If you want proof of his journey you can read more on my blog about his journey. http://bit.ly/NwbxDT

    I think you need to actually learn more about the organization before you badmouth it with incorrect information, because that makes you look the fool, not her. It also makes you look like the “woe is me mom” who would rather complain about how biomed wouldn’t work for your child, rather than putting some effort into trying it. If you haven’t tried it, you don’t get to say whether or not it works. It works. Autism is reversible.

    • Sullivan June 16, 2012 at 13:51 #

      I’ve been following the activities of groups like taca for years. I’ve been reading blanket statements about how this or that Biomed treatment works wonders. I’m still waiting for evidence.

      That’s not “bad mouthing”.

      More to the point, discussing how Jenny McCarthy bashes autism parents is not “bad mouthing”. If Jenny McCarthy wants to say that autism moms don’t want their kids to get better because the moms eat the attention, she can just deal with the fact that she’s going to get people annoyed.

      We’re these words that were only supposed to be heard by her supporters or something?

      If putting her own words in the public eye is “bad mouthing” her, then she deserves “bad mouthing”.

      I wish your kid well. I’m not going to follow your link. I’ve read too many “Biomed recovered my kid” stories that are like Jenny MCarthy’s: when the details come out, the “recovery” is something very different than the story. Be proud of your kid, but we need data, not anecdotes.

      • rh August 13, 2012 at 08:46 #

        dear friend sullivan, me and my hubby both are doctors and we are in neuropsychiatry field ( we are hard core professional doctors trained in medical college and earned our degrees), we had never thought that one day will come when our daughter will be diagnosed with ASD, since past eight months we have started biomedical treatment with diet change, as we were desperate to help her, we were ready to think out of the box, and this treatment has helped our daughter hugely, she has made significant improvements with this treatment and we tested and retested it by stopping biomed treatment, restarting the previous diet and everytime she deteriorated and lsot some of the gains, now finally me and my husband are convinced that this treatment works for some kids and our daughter is one of them.
        we also know some families who have ASD kids and the families who have used Biomed treatment along with other therapies have definitely better outcomes then the families who have used only conventional therapies.
        Biomed treatment helps to increase the efficacy of conventional therapies too.
        Now we are going for more advanced biomed treatments and we hope that they help us further.Wish u all the best for your kids.
        I sincerely recommend at least 2 year biomed treatment and diet change before u discard this option as non useful.
        I suggest reading THE AUTISM BOOK by Dr. ROBERT SEARS.
        All the best friends.

      • Chris August 13, 2012 at 15:04 #

        Dear rh,

        My son has seen a few neurologists and other medical professionals. While they can be quirky, they are very intelligent. They actually know English grammar and punctuation.

        This is why I don’t believe you, and will not run out and read Dr. Bob Sears book.

      • Science Mom August 13, 2012 at 17:51 #

        I suggest reading THE AUTISM BOOK by Dr. ROBERT SEARS.

        I have and don’t care to take advice from self-proclaimed experts and marketers. I prefer my information from actual researchers, not salesmen. And it is pathetic that you would hold yourself out as a neuropsychiatrist in an effort to appeal to your own false authority. You’re no more an MD than I am an attorney.

    • Sullivan June 16, 2012 at 14:04 #

      “It also makes you look like the “woe is me mom” who would rather complain about how biomed wouldn’t work for your child, rather…”

      So you are excusing Jenny McCarthy to the point that you too believe this line of bull?

      My family has participated in a clinical trial in order to get *data* which could help the community.

      But, hey, if I haven’t accepted some DAN doctor’s advice, I’m a parent who enjoys seeing me kid struggle with disability because that gives me attention?

      I don’t care that you tried to shield your comment with “you look like..”. Your statement demonstrates that you’ve bought into this insulting and demeaning viewpoint.

      I’ll complain about people like Jenny McCarthy and her crew when they demean autistics. I’ll complain about Jenny McCarthy and her crew when they demean autism parents. It would be wrong to sit back and do nothing.

      And, yes, she demeans autistics. Read the forward to “louder than words”. If you aren’t appalled, if you don’t see how calling autistics soulless is appalling, you are part of the problem.

      • Sheila Carney Damron June 17, 2012 at 15:16 #

        The group ARI has a link to research studies and data: http://www.autism.com/index.php/advocacy_research_1

        TACA also lists some research studies here: http://www.tacanow.org/family-resources/research-on-dietary-interventions-in-asd/

        More research on diet and autism: http://nourishinghope.com/understanding-autism-diet-nutrition-and-supplementation/why-diet-helps-the-science/

        I have a problem with this statement: “I’ve read too many “Biomed recovered my kid” stories that are like Jenny MCarthy’s: when the details come out, the “recovery” is something very different than the story. ” Are you suggesting that all the parents who have succeeded with Biomed had children who weren’t really Autistic in the first place? I would beg to differ with my child. You don’t have to read it, but here is a good example of the changes I saw with my son: (Numbers 2, 3, and 4 in the post apply) http://hope-lavender.blogspot.com/2011/09/surprises.html I don’t get paid for writing these blog posts, they’re simply my way of Paying it Forward. My son screamed, rolled around, hit himself, threw things, bit people… all the time. Now he will be starting Kindergarten in the fall in a mainstream class, not the pull-out class. People who don’t know him are surprised to learn that he has Autism.

        When my son was tested for yeast overgrowth in his gut, and I showed the test result to his regular pediatrician, she agreed that it needed to be treated with an anti-fungal. This is what you would do if any “typical” person were to present with yeast overgrowth. It’s not normal for a human to have off-the-charts yeast. This is not some sort of experimental treatment, but a treatment any doctor would do if they saw this kind of test result.

        When my son’s blood was tested for heavy metals, it showed too much lead and copper. His regular pediatrician then checked his sister’s blood, to make sure her lead levels were not too high, because this would be a concern for any “typical” kid, not just for a child with Autism. Her levels were normal (she does not have Autism).

        When my son goes swimming, he gets crazy behaviors from the chlorine. I now put him in a bath tub with epsom salts after each swim, to help him rid his body of the chlorine. He no longer has the behaviors. Epsom salts is often recommended by doctors for soaking in, and is not a controversial treatment.

        When my son was three, he was fairly non-verbal, speaking only two words at a time. “Eat pizza.” “Want drink.” Taking dairy from his diet brought 4 word sentences within two weeks.

        None of the treatments I have done with my son have been invasive. They HAVE been expensive and time consuming. They have been under the direction of a DAN doctor. The first thing the DAN doctor does is run some tests and ask lots of questions about the specifics of your child. It is not the same protocol for every child, because each child with Autism is different. But there is definitely a connection between the gut and the brain. Some children chelate right away to rid their body of the heavy metals that show up in testing. My son has not begun this process yet, because the DAN doctor said it would not work until we got his yeast overgrowth under control. Many parents try some new treatments that are potentially controversial. My choice was to start with the ones that weren’t, and see what happened.

        I wasn’t looking for a “cure” when I started this process, I simply hoped he would improve. He has shown a complete change. My son would have spent his adult life in a group home had I done nothing. Instead he will probably have a job and go to college. I am not saying that everyone should do the things that I have done, or that everyone would see the same results. But I do question parents who don’t at least run a few tests and give the diet a try. The first thing I did was take away milk. Nothing else. And I saw improvements in his speech and behavior. I saw the “Autism fog” lift off of him, and he became more aware of his environment. Taking away milk was fairly cheap and non-invasive. But you have to do it 100% or it won’t work. No milk in baking, etc. I think parents who say it didn’t work for them didn’t give it enough time, and didn’t give it 100%. There has been a peer-reviewed research study to show that 91% of ASD children on the GFCFSF diet showed improvement.

        Yes, much of the “data” is anecdotal, but there is also much research behind it. As a mother, I made a decision to try treatments with little possible harm. There is no harm to your child in removing dairy from their diet, as long as you supplement calcium. There is no harm to your child in removing wheat from their diet, as long as you supplement the necessary vitamins. I made sure to work with a doctor so that I knew what amounts of each nutrient he needed, and carefully planned his diet including drinks and snacks, paying attention to protein and fat intake.

        It has been a lot of work. But my job as a mother is to help my son if the tools are presented to me. The tools have been presented to me from other mothers and fathers whose children have improved. No, they’re not doctors. but the people who started DAN are doctors whose children had Autism. They wanted to find research to help their children.

        This is the video that inspired me to start: http://autismyesterday.com/trailer.html In the video parents suggest that vaccines have played a role. I feel that the vaccine debate is an important one to have but is really a side note to all you could get started with to help your child (diet) without talking about vaccines. Like I said, my son has had all his vaccines. And the vaccine debate and Jenny McCarthy are a distraction from the conversation we should really be having, which is that diet and Autism are linked.

        I know that the people I’m responding to may not listen and may write back with more reasons why changing your child’s diet is a bad idea. That’s fine, I know some people are unwilling to believe that there is hope for Autism. Maybe not a cure, but definite progress. So my reason for writing this lengthy explanation is actually not for the people who won’t listen, but in hopes that even one parent reads these words and decides to look into it further. Like I said, I’d like to Pay it Forward, in thanks for the parents who came before me and helped me help my child.

        More information can be found at the ARI link above, and here: http://hope-lavender.blogspot.com/search/label/GFCF%20diet%20and%20nutrition

      • Sullivan June 17, 2012 at 15:29 #

        “When my son’s blood was tested for heavy metals, it showed too much lead and copper”

        Did you take your child to a medical toxicologist or a DAN doctor?

        I find it distressing that DAN doctors often don’t refer patients to specialists. DAN doctors often use non-standard testing to support claims which do not hold up when people who are trained in the field investigate.

        As to recovery, Jenny McCarthy presents an extreme of what I was talking about. She went on national TV and told us her kid was “typical”. She stressed the point. And now we learn that her kid requires a very expensive special school.

        Can you point me to a webpage on the ARI website where the list alternative therapies which they recommend against? Surely with all the research they have supposedly done, something hasn’t worked. Certainly with the research they’ve done they’ve spotted at least one scam.

      • Sullivan June 17, 2012 at 16:16 #

        ” I know some people are unwilling to believe that there is hope for Autism”

        Why wouldn’t there be hope for any human?

        Begs the question, how much damage is done by the dehumanizing language used by people like Jenny McCarthy? When her book’s forward talks about autism stealing the souls of children, how does that help.

        It isn’t the non Biomed communities who have no hope. But if you get your information from Jenny McCarthy, taca, ARI, and like sources, you will never hear that.

        You will hear that non Biomed parents like the attention of having disabled children.

        And you will never hear from autistics. That is the real shame.

  13. Roger Kulp June 16, 2012 at 23:03 #

    I do think a lot of people are missing the bigger issue here.Is Ms.McCarthy back to saying her son had autism,not Landau-Kleffner? It’s so hard to keep up with everything she says.She is every bit as much of a fraud and a con artist as Andrew Wakefield.Doesn’t anybody actually confront this woman,and question her about this?

    I am a huge advocate of autism being as much a medical condition as one involving behaviour and neurodevelopment.I believe every single documented comorbid medical,psychiatric,and learning disability ought to be listed in the autism section of the DSM,and factored into determining the severity at diagnosis.I know both from reading studies,and from personal experience,when you treat an underlying disease,especially metabolic,and autoimmune,the autism improves.It does not go away,it just improves.Doing away with the underlying causes of something like head banging,does not “take away your kid’s identity”.This is as big a lie and a myth as vaccines causing autism.It’s treatment and management,not cure,sort of like with type 1 diabetes.

    But one problem,of many,I have with the DAN!/biomed/AutismOne approach is this one size fits all treatment approach,rather than having extensive testing before you start any treatment program.

    There are numerous studies showing how seizures can trigger regression,or make autism worse.There are studies about metabolic diseases,and other diseases like Dravet Syndrome,diagnosable by genetic tests,that are known to cause regression in the presence of febrile illness.As someone who has had multiple severe regressions from acute infection,and other illness,I can tell you this is not a one time thing.I get all this,What’s more,I have lived it.Not all autism is regressive,though.

    That said,I have yet to see one scientific,peer reviewed study about yeast,candida,and fungus being a factor in autism.It as every bit as much of a fraud as “metals”.If somebody comes up with one,I’ll take that back.

    As for colostrum,a quick Google Scholar search comes up with lots of articles about vaccines,and thimersol,or articles from alternative health sources.I can only find two sources that talk about colostrum in treating autism,especially the associated GI disease with colostrum.

    http://www.springerlink.com/content/3gp7831q4nv02113/

    http://www.ncbi.nlm.nih.gov/pubmed/20970971

    Both say more research is needed.Given how a lot of autistics have problems with dairy,and most colostrum is from bovine sources I doubt it’s a good idea.

    Nalafeina,I wish I could have told you “the names and sizes of Jupiter’s moons” as a child,but I was too busy banging my head,spinning for hours,kicking holes in the walls,smashing things,shitting my pants,and wandering for hours….and doing much of this in school.Not every parent is as lucky as you.

    Remember that every time you look at your son.

  14. Jennifer June 17, 2012 at 17:54 #

    Wow. She is really something. All moms With children on the spectrum are Warrior Moms. She is the absolute worst “advocate” for autism. There is no way I want to “cure” my son. He is amazing and I love him for who he is. Through therapies, I want him to have the tools to have an independent and successful life, but I want his autism to be a strength for he sees the work differently and that’s a beautiful thing.

    • Chris June 17, 2012 at 19:26 #

      All moms With children on the spectrum are Warrior Moms.

      :Except for those of us who do not agree with everything she says.

  15. Chas Higgins June 19, 2012 at 10:43 #

    Carey Sullivan – nothing on your useless website about the Italian ruling ? I cant see it anyway . you must be getting worried you have backed the wrong horse boy . there will be a day of reckoning for you & Salisbury et al . The VaccineDerivedAutism saga is comning to and end soon , and there will be a huge retribution against the collaborators ,

    • James June 20, 2012 at 04:06 #

      I love how child abuse is justified in the anti-vax community by ‘conspiracy’. God knows I’ll never trust any big corporation, especially drug ones. But you people who go on and on about a ‘reckoning’ while filling your kids with stuff that you trust on a wink and a nudge simply because its labelled ‘anti-pharma’ without subjecting it to strong safety checks that would put big pharma to shame and truly give you a ‘moral high ground’ are not the holier than thou warriors for truth and justice you believe you are.

    • Liz Ditz (@lizditz) June 20, 2012 at 22:43 #

      I can’t speak for Sully, Chas Higgens, but there are a couple of points I would like to make:

      1. I don’t read Italian worth a damn. Until the ruling is available in a good English translation, I am reserving comment.
      2. Why would one legal ruling from a provincial court in another country outweigh numerous studies with thousands of subjects? Or the fundamental science, that there’s no reason to suspect any aspect of the MMR vaccine as causal in autism.

  16. Science Mom June 20, 2012 at 21:09 #

    nothing on your useless website about the Italian ruling ?

    Why should there be? There is no English translation that I’m aware of and the decision has been criticised by EU agencies due to the use of Wakefield’s fraudulent studies.

    I cant see it anyway . you must be getting worried you have backed the wrong horse boy . there will be a day of reckoning for you & Salisbury et al . The VaccineDerivedAutism saga is comning to and end soon , and there will be a huge retribution against the collaborators ,

    And you keep holding on to that thought; when you’re that deep into conspiracy, I guess you have to spin anything you can to appear righteous.

  17. Liz Ditz (@lizditz) June 20, 2012 at 22:50 #

    Two days ago at Huffington Post, an excellent commentary by Jess Wilson (Diary of a Mom blog) on Jenny McCarthy’s speech:

    http://www.huffingtonpost.com/jess-wilson/autism_b_1607631.html?utm_hp_ref=twitter&comm_ref=false

    Jenny, I know that being outrageous is your thing. And God bless you for it. The irreverence and the F bombs and the parties at the Grotto — all good. Those are your choices. And I won’t judge you for any of them. And the path that you’ve chosen for Evan? I’m thrilled if it’s working for him. And I’d never judge you for that either. Because it’s not my place.

    Any more than it’s yours to call me or anyone else whose child doesn’t fit your mold or who doesn’t subscribe to your particular theories a victim. I am the farthest thing from a victim of anything. And I assure you, so is my child.

    Jenny, You are in a position to do so much good for our kids. Please, I’m begging, take the time to think about your words before you toss them into the ether. They matter so much.

    And then this comment, from a person called DEBhkj

    In my opinion it IS child abuse to simply ignore and “accept” your disabled child. It’s cruel and ifyou are just curled up in the fetal position and enjoying the attention you need to suck it up as she says and get help for your kid. A mom should never stop fighting for their kdis even if it means getting off your comfortable butt and DOING something. These kids can’t do for themselves. they rely totally on their parent. Autism isn’t something to accept and ignore and sweep under the carpet while you spend time doing other things even if thats your other kids. You have a responsibility to get that kid into speech therapy OT whatever it is THEY need because it’s not about you and your “acceptance”. It’s NOT ok to be autistic. It is not a blessing. It’s a disability and if you don’t get your kids help yesterday you are damaging them even worse and you should be ashamed at your laziness.

    That attitude is what I oppose.

    • James June 22, 2012 at 07:56 #

      That second person you quoted is an attitude I can understand to an extent where we’re talking about severely autistic individuals. Ie completely nonverbal and unresponsive and probably self injurous who are potentially destined to end up in ‘care’ for the rest of their days.

      The problem is as far as the Jenny Mccarthy & gang narrative is concerned thats ALL autistic people which completely ignores the spectumr nature of autism and how a catch-all solution to it (whether it be in a ‘cure’ or a willfull ignorance of the more severely affected who can’t function at all in society independently) is ultimately misguided and dangerous.

      That said personally I don’t object to siding more agressively with more neurodiverse inclined sides of the debate. I don’t think anyone can relaly doubt the kind of control the parental side has over the debate. All they have to do is wheel out a kid whose severely affected for the cameras and they get all the sympathetic parents pouring money in thanking god that didn’t happen to them.

      Addressing the needs of severely affected people even if it ends up in ‘cure’ territory (thats where I kind of differ from ASAN in that I could care less about what research happens so long as its sensible we research things with potentially far more worrying implications that I don’t feel autism research should simply ‘stop’) will not be an issue for neurodiverse people who I believe by and large understand and won’t dispute that some people may need more than simple acceptance. However reclaiming the dignity of more mildly autistic people from a hostile narrative in the minds of the public who can only percieve autism as a single thing with a list of ‘symptoms’ would be far harder.

  18. Sebastian Lawhorne June 21, 2012 at 21:43 #

    What were the page numbers of the “Louder Than Words” quotes, if I may ask?

  19. McD June 24, 2012 at 01:07 #

    Maybe we will find out if she really has the puzzle ribbon belly-button tattoo that appeared in the gun-toting anti-vax photo.

  20. diabetic breakfast July 9, 2012 at 09:06 #

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  21. lilady August 13, 2012 at 23:39 #

    Allow me to weigh in on Jenny McCarthy.

    Before she gave birth to her child Evan, she was a D-list celebrity whose career was fading fast. She found her “mission”, once Evan was born and she allied herself with the anti-vaccine crowd.

    Her Autism One conferences have featured such luminaries within the anti-vaccine movement as the Lupron-castrating Dr. Mark Gieier, Andrew Wakefield and the purveyors of MMS…an industrial bleach for oral and rectal dosing of children who have been diagnosed with ASDs.

    McCarthy now claims she needs money to provide specialized (ABA?) treatments for Evan…as if, this justifies her screeds directed at parents who don’t IV chelate their children, who don’t subject their child to off-shore intrathecal stem cell treatment and who don’t abuse their children by shoving bleach solutions into their child’s rectum…in a futile effort to “recover” their child.

    Recently Evan was hospitalized with seizures…yet Jenny was able to “tweet” her groupies. How does that work? I recall, when my son was frequently hospitalized for control of seizures, I never left his bedside…but then I wasn’t trying to revive an all-but-dead career as a D-list celebrity.

  22. Becky Goins November 7, 2012 at 22:03 #

    It’s funny to me how when a parent has a child with a vaccine injury so many people feel they have a right to judge the parent for trying to get information out about their own expereince. My daughter is a vaccine injury victom of the Gardasil vaccine, she has been sick for a long time. It’s hard but it’s even harder when so many people think they have the right to judge me just because my daughter is very sick from a vaccine. I was one of the sceptical ones once but look where I am now. I’m walking in those shoes and I spend much of my time trying to get information out about being informd before getting vaccinations. To tell the truth I don’t care what anyone has to say about that. Parents getting the word out is what kept me from getting my daughter the last shot of Gardasil. They probably saved her life by sharing their stories. I respect and appreciate all they do all while dealing with big struggles of their own. Walk a day in the life before acting like you are the ultimate decision maker for everyone else. I hope GOD doesn’t decide you need to walk in another’s shoes for awhile…. you ju

    • Science Mom November 7, 2012 at 22:45 #

      It’s funny to me how when a parent has a child with a vaccine injury so many people feel they have a right to judge the parent for trying to get information out about their own expereince.

      Jenny McCarthy doesn’t have a ‘vaccine injured’ child; he has a seizure disorder. True vaccine injuries are rare and for those who think their chld is vaccine injured, almost always turns out to be either something else or simple re-writing history to make vaccines fit their biases.

      My daughter is a vaccine injury victom of the Gardasil vaccine, she has been sick for a long time.

      I’m sorry your daughter is feeling poorly but you need to substantiate your claim with something much more thoroughly than your say-so.

      Walk a day in the life before acting like you are the ultimate decision maker for everyone else. I hope GOD doesn’t decide you need to walk in another’s shoes for awhile…. you ju

      What makes you think that some of us aren’t walking in those shoes and even ones that are far more challenging? We just don’t blame vaccines. It’s pretty arrogant of you to think you are the only one with challenges and your need to wag your finger just because the vast majority of people don’t buy into your fantastical claims.

    • Chris November 7, 2012 at 23:48 #

      So do you plan to follow Ms. McCarthy’s advice to steam your child? Would that help if it turned out your daughter actually had mononucleosis? Or the thing that caused my son to literally slow down: hypertrophic cardiomyopathy?

    • Sullivan (Matt Carey) November 7, 2012 at 23:50 #

      Becky Goins

      I wish your daughter well. There are autism blogs who also take on Gardasil as a topic. This isn’t one of them. Not that I recommend those, for people in the autism communities or, frankly, anyone but scholars of denialism.

      With all due respect, your comment appears to be doing exactly what you decry: judging others.

      Who is judging you here? You weren’t mentioned here. Gardasil wasn’t mentioned here. Until you brought it up. The article above isn’t about vaccine injury.

      Did you read the article above? Watch the video? Is it OK for Jenny McCarthy to judge others as “being in love with the victim role?”

      For the record, I walk a day in the life of a parent with a child with significant disability every day. I don’t appreciate Jenny McCarthy’s judgmental approach that I am somehow in love with the victim role and that I’m keeping my child disabled so that I can get attention. Are you defending Ms. McCarthy?

      Third, putting judgment onto “GOD” doesn’t really work to distance yourself from being judgmental. It is still you who are the one making judgment, not GOD in some future.

      Again, I wish your child well, but I think your comment is misplaced here.

      • Lara Lohne November 8, 2012 at 04:35 #

        Just to advise you, Sullivan, Becky probably didn’t watch the video because it has been permanently deleted.

        I am totally with you on the ‘victim’ versus ‘warrior’ mom. I don’t consider myself a victim because I have been blessed with six children, all of them beautiful, healthy and strong. Yes my youngest has some challenges but he isn’t a burden and I never thought of him as that. I’m not in a fight with him, or with his autism, so why would I need to be a warrior?

        There are times though when my mommy tiger might appear. Generally those are when my son is threatened, or his rights are being infringed upon. He will be six years old in March and really is only just now spending time with NT children. They have asked me if he’s crazy, why he makes funny noises or moves weird. I tell them he has a disability called autism and it just makes him process things a little differently. What else am I going to tell them? First off it’s hard to explain autism to a bunch of kindergarteners. Second they aren’t asking me those questions to be mean, they all genuinely love my son, they are just curious why he acts differently sometimes and why he rides a different bus home from school. No need for mommy tiger there, obviously.

        One of the bus drivers of the public transportation system here got to see my mommy tiger a few months ago, when he threatened to kick us off the bus if I didn’t make my son be quiet and sit still because he was distracting the driver. I attempted to explain that my son has autism and this was what he needed to do to cope with riding the bus (he rocks and hums loudly as stims.) If I tried to keep him quiet and still it would ultimately end in a prolonged meltdown, so generally, when he needs to stim, I let him stim. I told the driver I can’t keep him quiet or still, and before I could continue and explain it wold only make him much louder and move a lot more then he was, the driver cut me off and said, “Yes, you can make him be still. Because if you don’t, then I will or I’ll have to ask you to leave the bus.” Then comes the low growl in the back of my throat, the claws come out, the pupils contract and I say to him, “No, I can’t and neither can you He has autism. This is what he needs to do to deal with riding the bus. You need to just deal with it because you can’t kick us off the bus because that would be discrimination!” He stopped talking to me and called into the office on his walkie talkie phone and asked for confirmation of my claim of discrimination. They confirmed that he can’t kick us off the bus. Three stops down the road, we got off the bus and this driver was all of a sudden extremely grateful for our patronage and thanked me profusely for riding with them today. Hmm…

        I’m not a victim, I’m not a warrior, but when necessary I can be a tiger.

    • mikemawords November 8, 2012 at 13:03 #

      Sorry your daughter is sick but if you had any proof of vaccine injury, you would have made it to the vaccine court rather than whining here. That court has a very low bar for proof and had you won (or even presented) your case there, I’m guessing you might have mentioned that along with any shred of evidence to link Gardasil to whatever illness your daughter has.

    • Sim December 23, 2012 at 07:36 #

      Maybe try speaking to some real humans.. Not the things that lurk around here.. All of whom should have been aborted IMO.

      • novalox December 23, 2012 at 22:08 #

        @sim

        Nice to see your true colors, and that you really are nothing more than a monster.

  23. lilady November 8, 2012 at 06:22 #

    @ Becky Goins:

    You came to this blog, both guns blazing and accused Sullivan and posters here as lacking empathy, for what you *claim* is a vaccine injury.

    Many of the posters here have children who are diagnosed with ASDs and other developmental disabilities. Some of the posters here are on “the Spectrum”…and most of the posters here are educated in the sciences of immunology, virology and bacteriology.

    Speaking as a parent of child born with a rare genetic disorder, who had autistic-like behaviors, I never considered that I was “a victim” and I never wallowed in that role. I detest Jenny McCarthy who uses her son’s seizure disorder to revive her all-but-dead “career”.

    Perhaps you see yourself and your daughter as “victims”, based on the anecdotal stories that you read about vaccine “injuries” on SaneVax, Age of Autism, the NVIC and other crank websites. My suggestion to you is to get some counseling from a professional to deal with your emotions and to raise an emotionally healthy daughter, whom you have cast in the role of “a victim”.

    • Roger Kulp November 8, 2012 at 14:31 #

      Jenny McCarthy showed her true colors.Once she let out her son had Landau-Kleffner,you did not see her step down from Generation Rescue,issue a public apology,and then become an advocate for L-K.

      As most of the Vaccine Court cases show,these children had problems long before they were vaccinated.

      And as someone who was once diagnosed with autism,and has more recently been found to have a complex combination of inherited metabolic and immune disorders,I will say that there is a lot of work involved in getting a “real” diagnosis,other than autism.The many different genetic diseases that can present as autism often have a wide spectrum of severity,too.It isn’t always children who are acutely ill at birth.Many of these diseases have neuroimmune elements,science is just starting to understand,where fever triggers regressions or seizures,vaccine or no vaccine.

      It is much more easier to scream that your child was vaccine damaged,than it is to spend years of work getting one round of tests after another,and doing the research involved in putting test results together to the point where they make sense.You can be led down all sorts of false paths,while you,or you child’s health,continues to decline.

      And since these are usually rare diseases,you are not likely to find an expert in them in your town,or even in your country.

      Not every parent is up to the challenge of unraveling one of these diseases,and most doctors aren’t either.Vaccine damage,is the quick,simple,lazy parent’s answer.

      • Sullivan (Matt Carey) November 8, 2012 at 17:28 #

        Roger Kulp,

        The idea that Ms. McCarthy’s an has LKS was not from her public statements but from outside observers (including comments in the medical literature)

      • Chris November 8, 2012 at 18:29 #

        At the very minimum, her boy has a fairly serious seizure disorder.

        More often than not the cause is not known. Trust me, I have had conversations with more than one neurologist about that. The only time one said there was a cause was the one who checked my son after he went to the emergency department after a major seizure. He told me there was a form of infectious diarrhea that causes seizures, and he would not put the boy back on phenobarbital (which he had just recently been weaned from).

    • Sim December 23, 2012 at 07:34 #

      You’re a really ugly person.

      • Chris December 23, 2012 at 18:57 #

        Why do you think insults are a valid substitute for actual evidence? If you have any real scientific evidence to support Ms. McCarthy’s claims, then educate us with the title, journal, and dates of those PubMed indexed studies.

      • lilady December 24, 2012 at 00:16 #

        @ Sim: Who the hell do you think you are addressing here…with your vicious unprovoked attacks on the LB/RB blogger and the posters.

        McCarthy was a D-List celebrity whose “career” was fading fast until she had her son Evan who has a documented difficult-to-control seizure disorder. She came to the attention of J.B. Handley, a nasty vicious anti-vaccine activist and the founder of Generation Rescue, who chose her to be the spokesperson for his GR organization.

        McCarthy then pimped out her son’s medical problems, claiming that he was “vaccine damaged”….and so dumb that she couldn’t get the sequence of events that led to her son’s “vaccine damage that caused autism”.

        She has continually made that “claim”, in order to promote her brand.

        Recently, she was hired as a columnist/blogger for a Chicago newspaper and the editor of that daily clarified that she would NOT be posting on autism or vaccines…but rather her dating habits, family relationships and parenting. The column she wrote “I’m So Horny”, garnered the most comments.

        McCarthy is promoting her latest book where she described her “trip” on Ecstasy when she dry-humped a tree.

        Classy? I don’t think so. She’s a coarse vulgarian, who pimped out her son’s medical history and embarrassed her son with her crass promotion of her column/blog and her latest “tell all” book.

        Sim, you’re the ugliest person who has ever posted on LB/RB.

  24. Joe March 1, 2013 at 21:54 #

    Jenny McCarthy’s son was never autistic. She didn’t cure him. He got on anti-epilepsy drugs and got better. She shouldn’t even be speaking about autism. How dare her insult mothers of autistic children. What a low class attention seeking woman.

  25. Joe March 22, 2013 at 03:41 #

    Jenny McCarthy is a fraud and con artist. Anyone with higher critical thinking skills would examine her past and conclude this woman is a possible sociopath. Everything is about her. Her son never had autism, but she pushed this diagnosis and wrote a ton of books about it, in only a few years after this alleged vague diagnosis. Then, suddenly, it’s not an issue anymore and we see her disappear and re invent herself once again. She’s truly nuts. A complete fraud. Now she’s jumping into fund raisers for NYPD, etc..I mean really? If she wasn’t a celebrity, she’d be put on a 5150 hold. She’s a classic case of a mom who will use anyone and anything to further her career. Just pathetic. Isn’t it ODD that she is no longer talking about her son’s alleged autism? Yes, it is. It shows that her son never had autism. WHich is why she must continually push the false reality that he was cured and that other moms and dads that have REAL autistic children are just “playing victim.” She’s evil. Straight up evil woman. Hope she finds God.

    • LizP July 14, 2013 at 06:20 #

      FYI – there was a movement long before Jenny came on-scene. Jenny is not a leader, she is a follower. It just so happens that she is able to garner far more attention than the families who showed her the way. As one of those families who helped Jenny learn the ropes, I am proud of her son’s progress (“recovered” or not), and of her for not simply giving in and settling for whatever outcome happened to Evan. Regarding LKS, having LKS does not preclude an Autism diagnosis. My daughter has MBP, LKS, Epilepsy, hippocampal sclerosis, metabolic dysfunction, and mitochondrial dysfunction (among many diagnoses), but she still has Autism.
      Her initial diagnosis, at 2 was she would never speak with intent or toilet train and would require institutionalization by 5, we began pursuing biomedical interventions, in addition to the therapies she was already receiving. At 5 we were told she was retarded, functioning at the level of a 2 – 3 year old, ineducable, and would probably remain pre-verbal. We continued biomed and began ABA/VB/PBS/DTT and moved her to a private school. By 2nd grade she had caught-up academically, by 5th she could speak (though not like the other kids), by 7th grade she could read aloud in a typical manner and speak in full, proper sentences and paragraphs, with appropriate tone and intonation; she will always have to work hard to work around her Autism, but she is learning how and succeeding.
      Had I listened to the Developmental Pediatrician who diagnosed her, she would have been institutionalized for the last 8 years, unable to tell me her wonderful stories and share her secrets and hopes and dreams, she would have missed-out on helping her little brother learn to jump on the trampoline and bedtime snuggles and so much rich family life, and the worst thing would have been the loss of opportunity to choose her future and develop the skills to fulfill her choice.
      While her “recovery” will never result in her not having Autism, she chooses to pursue it anyway, because she can see how her hard work makes life in the mainstream world more navigable, tolerable, and fun; and she feels pride when she masters something new and sees how she is building something more than random skills, she is building the road that takes her where she wishes to go.
      I would tell any family with a child anywhere on the Spectrum to try taking the first steps in biomed (if they have the intestinal fortitude to stick with it) – I have seen first-hand how much improvement it can yield, not only in Autism, but also with bi-polar, schizophrenia, add/adhd, asthma, lupus, and even narcolepsy. With or without Jenny, families will continue to reach back into the crowd and help the newly diagnosed and the newly interested attempt to change their loved-ones’ trajectory…It seems there are two movements afoot, one wishes to leave those with Autism exactly where they are, and another which wishes to help each and every individual reach the highest level they are able – neither is more right or more wrong, and throwing stones does little to improve the stone-thrower’s image; why not simply live and let live and spend the same vitriolic energy to build something that raises up the world rather than tearing down a person?

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