Jenny McCarthy’s son was never autistic?

20 May

A provocative piece in the National Post suggests that very thing.

It is not even certain that her child ever had autism; neurologists have pointed out that her description of the symptoms, and recovery, are more consistent with a rare disorder, Landau-Kleffner Syndrome. Ms. McCarthy may thus be trumpeting a “cure” for a disease of which she has no parental experience.

More than a little interested I tracked down this Letter to Neurology Today.

In After Vaccine-Autism Case Settlement, MDs Urged to Continue Recommending Vaccines (June 5), Dawn Fallik correctly cites Jenny McCarthy as a celebrity fanning the flames of the vaccine-autism link. McCarthy also makes parents think that autism can be cured with unproven treatments – as she claims is the case with her son – documented in her much publicized book, Louder than Words: A Mother’s Journey in Healing Autism (Dutton 2007).

Unfortunately, what the public does not realize as well as perhaps McCarthy is that her son was most likely misdiagnosed with autism in the first place. His disorder began with seizures and, subsequently, with the seizures treated, he improved. This would be more consistent with Landau-Kleffner syndrome, which often is misdiagnosed as autism.

Daniel B. Rubin, MD, PhD

OK, so next stop Landau-Kleffner syndrome.

It is characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electroencephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills. While many of the affected individuals have clinical seizures, some only have electrographic seizures, including electrographic status epilepticus of sleep (ESES).

…..

The syndrome can be difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems.

And is Rubin right? Did Jenny McCarthy’s son Evan’s illness begin with epilepsy?

“I found Evan seizing in his crib,” she told ABC’s Deborah Roberts. “He was foaming at the mouth and his eyes rolled back.”

McCarthy rushed 2-year-old Evan to the hospital. After a few days of multiple seizures, doctors concluded that Evan had epilepsy, but McCarthy was not convinced. Her maternal instinct told her that something was still wrong.

Angry and skeptical of the medical advice she had been given, McCarthy went to a second neurologist who gave her an earth-shattering new diagnosis: Her son has autism.

So yeah he is. Evan’s first presentation was epilepsy.

Not exactly enough to give anything approaching a definite answer but still, interesting. I wonder who diagnosed Evan.

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101 Responses to “Jenny McCarthy’s son was never autistic?”

  1. David N. Brown April 8, 2010 at 00:44 #

    Somewhat surreal… It reminds me a little of Satan’s boyfriend Chris on South Park.

  2. Katie May 25, 2010 at 03:51 #

    This is just going off what we’ve learned in class about autism (med student), but even though autism is diagnosed later in most kids (around age 4), the signs and symptoms are supposedly there early on. So if you look at pictures of the child or home videos, you can see that something wasn’t right (ie, the kid didn’t look when his/her name was called, no pretend play, things like that). So there’s probably no way he all of a sudden had no soul after the autism shot, and if her son really did have autism it would be clear from the photos.

    • John Jones November 28, 2012 at 23:13 #

      Be careful. My daughter would not respond when her name was called. She had an ear infection. The dr couldn’t see it. on and on…

  3. David N. Brown May 25, 2010 at 18:32 #

    “if you look at pictures of the child or home videos, you can see that something wasn’t right…”
    I think even Jenny’s accounts show this. In particular, she describes her son “flapping” by age 1, which is considered a major feature of autism (though I’m a little skeptical how useful it is for diagnosing infants).

  4. senta September 21, 2010 at 12:58 #

    The important thing is : her son got very ill whatever nametag you put on it. To me epilepsy, autism or Landau are all horrible conditions for which they are generally ‘no cure’. So congratulations to Jenny and for sharing her experience. My child was also autistic low functioning and is now fully recovered thanks through all these biomed treatments and without ABA or other therapies.
    I was wondering if he would ever be able to speak again and to develop some intelligence, if he would be an assisted person etc…Well today (after 3 years) you could not tell this child ever had a problem and even find him pretty clever.

    Discussions about being a real autistic have absolutely no sense. Autism is defined by : behaviours and cognitive and physical traits but not by medical labs. Doctors say: we don’t know why they have autism, we don’t know what’s going on, but we are certain that your son has autism and will never recover. Therefore the definition of autism is ” a condition that you are not allowed to recover from’. If you do then there was a misdiagnosis…this is absolutely ridiculous.

    My friend’s daughter was autistic from birth, Kanner syndrome (the worse diagnosis). Her dd also recovered with biomed (and therapies) going from an IQ of 60 (mental retardation) to 140 (exceptionnally gifted). All other skills came back, stopped mutilation, stims etc…

    But it’s true the diet doesn’t work for all of them…just like cancer for example some people recover and some people die…would this be a good reason not to try it and just give up?

    Can you deny a child the right to be treated? If they have GI problems, or chronic bacteria and viruses or mercury in their sytem and lack nutriments…do you think it doesn’t have to be treated because ‘it’s part of the condition called autism’.

    Doctor’s who still pass on this stupid autism=uncurable myth are a shame to science and their patients.

    Senta.

    • Sullivan September 21, 2010 at 17:50 #

      Senta,

      Whether Ms. McCarthy’s son has Landau-Kleffner syndrome (LKS) is an important question in regards to his recovery. Kids with LKS often make very large gains when their seizures are controlled. That would mean that it was the seizure meds, not the diet, antifungals or whatever else, that helped him make his progress.

      Can you deny a child the right to be treated? If they have GI problems, or chronic bacteria and viruses or mercury in their sytem and lack nutriments…do you think it doesn’t have to be treated because ‘it’s part of the condition called autism’.

      No, I can’t deny a child the right to be treated. Never said I did. There are, however, a lot of people who either through misunderstanding, ignorance or just plain desire to spread misinformation, who promote the idea that a segment of the autism community would deny treatment for GI problems, infections, mercury and the like.

      Now, it is another thing entirely to point out when these “therapies” are based on bad science and needlessly put children at risk. I will speak out when I see that happening. If people wish to put a false label on me for those actions, it is not of my doing.

  5. Visitor September 21, 2010 at 15:05 #

    Senta: Unfortunately, you are wrong. While Jenny’s McCarthy’s family circumstances and her son’s problems are private to her, and, as you say, what one calls her son’s problems is less important in that context, this isn’t the end of it.

    She chose to exploit and enhance her celebrity status with the damaging public claim not only that her son had autism, but that it was caused by a vaccine and, moreover, she cured it with biomedical treatments.

    These are public claims, for which she has produced not a shred of evidence, and which all public circumstantial evidence suggests are false.

    This is truly shocking conduct. If she is unable to substantiate her allegations, she deserves nothing but the public’s contempt.

  6. leslie October 15, 2010 at 00:22 #

    Breaking news: Famous “High Functioning” Autistic Woman now claims to be Multiple Personality Disorder

    YouTube – 1210donna’s Channel Channel of Donna Williams, international bestselling author, artist, with autism recently diagnosed with Dissociative Identity Disorder

    interesting!

  7. Sullivan October 15, 2010 at 00:47 #

    Leslie,

    Just to be clear, are you trying to say that Donna Williams is not autistic?

    Here is what Donna William’s web page has to say:

    “Other diagnoses over the years including primary immune deficiencies (lack of white cells, no IgA, low IgG2, D deficiency), gluten, salicylate and phenol intolerance, severe casein allergy, type 2 diabetes, a B12 deficiency and a genetic myalgic condition which results in higher levels of inflammation than most people. I was also diagnosed with atypical epilepsy after an EEG, with visual perceptual processing disorder, mood anxiety and compulsive disorders and in 2010 got an additional diagnosis of Dissociative Identity Disorder D.I.D. ”

    It appears this no diagnosis is in addition to her others.

    I’ll add, I don’t think “high functioning” and “low functioning” are accurate or valuable terms. Ms. Williams is a good example where such a simple label is somewhat misleading.

  8. Lydia Bush March 31, 2012 at 21:05 #

    Jenny McCarthy wrote in her books about how the signs of Autism were obvious in her child BEFORE the seizures she just didn’t know any better because he was her first, and a boy at that. She clearly wrote how when he was diagnosed with Autism and she learned about it it became painfully obvious in his social, speech, and cognitive delays and skills that he had been affected for some time before the seizures became obvious. Don’t talk about someone when you haven’t even read their work.
    Mother of two boys with vaccine induced Autism.

    • Sullivan April 1, 2012 at 16:31 #

      I’ve read her first book. I got it free in a box of therapy supplies someone gave me.

      Here is a bit from Frontline where someone finally asked the key question. And she dodged it:

      [Questioner:] How long after the MMR was that first seizure?
      [Jenny McCarthy:] You know, a lot of people think, and probably from me saying in some interviews, that it was after the MMR I noticed changes.
      I don’t think it was just the MMR shot that caused any kind of trigger with autism. I think it was a compilation of so many shots to a kid that obviously had some autoimmune disorders. So I would say maybe a couple of months, a month or so after the MMR, I started to notice some physical ailments such as constipation, rashes, eczema. That was like the first little sign. And then the train just kind of descended from there.

      But here is what she said on Oprah in her “louder than words” tour (much earlier)

      “Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter — boom — the soul’s gone from his eyes.

      So, yeah, she says there were signs before the seizures. But was iit a “boom” and the soul is gone or some physical ailments and a slow slide?

      We could also go into the question of is it ok to call autism a lack of soul.

      And, when was that MMR? If her son was vaccinated by the schedule it was at least a year before the seizures started. Why can’t she tell the public that simple detail?

  9. Chris April 1, 2012 at 07:44 #

    How can we tell when she keeps changing her story?

  10. Lawrence April 1, 2012 at 11:54 #

    @Lydia – but I thought Jenny was proud of her “indigo child” as the next step of human evolution? Oh wait, that was story #1 (or was it #2). Then it was Autism, then he was cured, then it was something else, and now I think it is something else entirely – seriously, given her propensity to change her stories more than she changes her clothes, how are we supposed to give her any credence at all?

  11. Thomas April 1, 2012 at 12:57 #

    “Mother of two boys with vaccine induced Autism.”

    Do you agree with Jenny that your children have no souls?

    Father of a children with autism (who is sick of the vaccine-cause-autism lie)

    • Andrea July 17, 2013 at 21:57 #

      Very good! So sick of hearing about the vaccines causing Autism. My son has Autism, and of course he has a soul! I see his soul trying to speak to me every day, I just can’t always hear it.

  12. McD April 19, 2012 at 10:55 #

    I feel really sorry that Evan is going to read that some day.

    I have a presentation for the third-year behaviour analysis class (and sometimes abnormal psych) which includes an update of my lad’s progress to date for illustration. I have given it every year since he was two, and that first presentation was based on a presentation I wrote when he was 12months old and I used him as demo-boy for a comparative psych lecture. He will be 8 this year.

    Each year when I pull it out I am amazed at his progress, and amazed at how my memory telescopes, at what I forget (both high and low points). Jenny’s changing story is perfectly normal, particularly if she didn’t have some reference point to anchor Evan’s first seizure to.

    However, it does look like there was nothing at all related to the MMR vaccination. From what is available, the narrative looks to have been largely constructed retroactively when the book came out. Either that, or there was some serious denial/cog dis going on for a few years.

    Maybe we can put the extremely offensive stolen soul claim to rest. Jenny has given us a time window for Evan’s disappearing soul – up to a couple of months after his MMR. According to Wiki, that should have occurred by 15 months, so giving her the benefit of the doubt, let’s say Evan’s soul ‘disappeared’ before he was two. That would be mid 2004.

    According to Time magazine, Ryan got a diagnosis of Autism in May 2005. The last link below does sort of indicate that it took a while to get a ‘proper’ diagnosis of autism. Which may just reflect that you can only get a provisional diagnosis before the age of three, under the current DSM-IVR. So the May 2005 dx date fits in almost perfectly (Evan was born in May 2002).

    But throughout 2006 Jenny was flogging her book “Life Laughs”, during which she wore a T-Shirt advertising her IndigoMoms website:
    http://forums.randi.org/archive/index.php/t-55744.html

    In addition to running her own website, she wrote an article about being an Indigo Mom of a Crystal child:
    http://childrenofthenewearth.com/free.php?page=articles_free/mccarthy_jenny/article1
    in which she stated:

    I knew immediately that changing education in schools was my global life mission.

    And finally in December 2006 she was interviewed by TVGuide, again not only mentioning Evan, but noting that she is in the process of writing her next book:
    http://www.tvguide.com/news/Jenny-McCarthy-Asks-40781.aspx

    TVGuide.com: How much are you enjoying the writing thing?
    McCarthy: Oh, I love it. I absolutely love it. I have a couple of different things in the works, which you’ll see soon.

    Then in 2007, the “next book” comes out in September: “Louder Than Words”. A new round of publicity ensues, the IndigoMoms website is pulled, and in a new interview, the last few years are rewritten as heart-wrenching:
    http://www.pr.com/article/1076
    And her new life’s mission:

    When this happened, when Evan got the diagnosis, I knew immediately deep down within me, that I was literally supposed to be the one to come out about Autism and just kind of spread the message to the world.

    Frankly I don’t quite know what to make of it.

    If she got a life’s mission to spread the word about vaccines and autism in 2005 (with the dx), why state her life’s mission as changing education in schools in 2006, before finally going over the top in 2007. There seemed to be nothing wrong with Evan’s soul when he was a Crystal child through to 2006.

    I suspect Jenny was either not aware of the full impact of Autism early on, or thought it was more easily “fixed” than it turned out to be. She may have been expecting Evan to be treated and “over” it soon at the time she was flogging her Last Laugh, and may not have planned to go public at all – she had written all those “mommy books” and branded herself as a comedienne. When the cure didn’t happen she may have lost the plot.

    • Austin June 8, 2012 at 06:44 #

      Thank God, someone who does their research and is educated in ABA. I’m an ABA therapist working in the the North Texas area and I find myself disgusted by what I hear about Autism. And I must have missed the Crystal Child thing but I dont even want to know. Is McCarthy planning on handing out cups of fruit punch right before a comet swings by; keep up the good work McD it’s comforting to know ABA will get a therapist of your caliber. We’re at the front lines with wacko’s and fad “cures” on one side and then just doing our job on the other side. I find the ignorance on the part of those who would openly preach about Autism yet call us crackpots because we practice ABA- the only evidence based treatment model for ASDs; i find it tiresome and annoying. But what really boils my blood is when the news picks up on one of these wack-jobs and begins a new cycle of fad cures/causes and end of convincing a family to try it on their child. Anyways, i suppose it’s rather obvious i can get a little emotional about these things. God Bless

      • McD June 11, 2012 at 09:46 #

        Thanks for your comments. I am a researcher though (EAB, not ABA). My son was diagnosed, and I got an adult diagnosis (Aspergers) after I qualified (and my Dad is almost certainly on the spectrum as well), so my main interest is as a parent. I was quite shocked to see the amount of misinformation about ABA in ASD circles.

        Like most parents here, I think the “disappearing soul” aspect of this report was really disturbing. My son is considered extremely challenging; he is a little monkey, a destructive whirlwind. But he has a lovely unique gentle personality and as much or more “soul” as the next person. And I am sure the same is true for Evan, a young lad who does not deserve this – growing up to read these statements by his Mom.

      • Mom November 24, 2013 at 22:38 #

        Right there with you!! ABA is the first thing I tell fellow parents to get their child into after a dx. You wouldn’t believe the number of people I have come across who say “I didn’t do ABA (or speech or OT), only biomed…” And I think YOUR POOR CHILD!! I blame AoA, GR, Thinking Moms, AIM for this. It’s absolutely criminal.

      • Lara Lohne November 25, 2013 at 04:00 #

        According to adult autistics, who had to endure ABA as children, they can attest to the fact that ABA is, in fact, adding to the problem, not providing a solution. Autistic children don’t need t be trained into acting neurotypical, the neurotypical society needs to make adjustments to allow them to be autistic. That is the only way you will have a fully functioning, well adjusted individual who is able to contribute to society and will feel like a worthwhile individual.

  13. McD April 19, 2012 at 11:03 #

    Correction to above: Don’t know why I called Evan “Ryan” at one point in the above post.

  14. Julia April 24, 2012 at 04:55 #

    Sel
    January 26th, 2010
    18:16:39, The vast majority of veterinarians recommend a whole series of vaccines for pups. After that they comply with local regulations on how often Rabies vaccines are required [every 1 or 3 years]. The diseases that are prevalent in the area helps to guide the rest of their recommendations. It is a very small minority of veterinarians that jumped on the anti-vaccine bandwagon for whatever reason[s]; i.e. the veterinarians did not start this modern version of naturalistic-fallacy-based medicine. Please do not use veterinarians as your iron-clad proof that vaccines are unhealthy etc.

  15. alexdombroff@alexanderdombroff.com January 12, 2013 at 16:37 #

    alexdombroff@alexanderdombroff.com

  16. lisa February 23, 2013 at 04:10 #

    I’ve read a lot of the comments, some negative and some positive. You can put as many labels as you want on a child or person but the bottom line was that her son was sick. Doctors didn’t provide much help so she sought out the help herself. The crazy thing is that he got better. She also had helped millions of other families out too. Yes, I have a son with autism. What is annoying is listening to people like Austin say…”ABA is the only evidence based treatment model for ASDs.” I hear this all the time from ABA specialists. I think it’s the first thing these specialist learn in college. Well, in a few years, all these specialist are going to be eating their own words because the evidence is astounding as alternative treatments can actually recover these kids. No, not ever child will respond but many can. No, not all completely recover but a lot will. Sadly, I’ve seen some kids just not respond at all to alternative treatments. However there is a great number of kids that do. What absolutely pisses me off with Austin’s comment is that I’ve had first hand experience with my son and his ABA specialist. I saw and learned many of the tactics they used on my son. And if I had listened to the my sons specialist who all pretty much regurgitate the same nonsense…”ABA is the only treatment that has been proven to work,” I would not see my now vibrant, bright eyed, boy. Yes, he’s recovered probably 75%. Yes, he still needs some work and there is always constant tweaking but no longer do I have to use “tactics” when he is having a tantrum over dropping a toy. He simply doesn’t have them.

    • Sullivan (Matt Carey) February 23, 2013 at 04:32 #

      “Doctors didn’t provide much help so she sought out the help herself.”

      How, exactly did she control his epilepsy herself?

      The answer is, she didn’t. That would be Doctors who did that.

      As to the “overwhelming” evidence that alt-med cures autsim, I am not easily overwhelmed. I’ll settle for any evidence, not just overwhelming.

      How’s this. The founder of Jenny’s org told us all that chelation would “get your child back” in two years. The evidence was overwhelming. That was, what, eight years ago?

      Just an example. I’ve heard “the evidence is overwhelming” and “just wait two years” over and over.

    • Lara Lohne February 23, 2013 at 11:03 #

      Lisa,

      This is all because autism is developmental DELAY not stasis. Most everyone with autism, save for the very profoundly affected, will progress and each at their own pace. My own son was non verbal until he was four and his meltdowns (which is different from a tantrum, mind you) were frequent, though they did decrease after we taught him a few simple signs to help him let us know when he wanted or needed something. But about the age of four, something clicked with him and then words just began to sprout out of him. He still gets overwhelmed from sensory stimuli and can result in a meltdown, but I’m pretty good at recognizing his triggers and helping him stay calm when something unexpected comes along.

      From then up until he began kindergarten this year he was speaking mostly in three to four word sentences and in the form of questions as if someone else was asking him if he wanted something, as his main means of letting people know what he wanted or needed. Unless of course he was repeating lines from his favorite movies, and he has so many of them that he repeated a lot, but it wasn’t conversation. He was talking though, and I encouraged it by sometimes repeating the next line that came after the one he had just said, and in a way there was a back and forth exchange going on, even though there wasn’t really any information being exchanged.

      After only a couple of weeks into the new school year, he bloomed. He began sharing his thoughts about things, he still sometimes will use third person questions (did you see the helicopter? as his way of telling me what he saw) but it opened up new territory for him all the same. Through the year there have been minor regressive states, but nothing serious. Basically when he has progressed and learned and perfected his new skill set, he will take a break for a little while and go back to the familiar. This is a very common thread in all autistics. Just ask the adult autistics out there, and there are many, and they will tell you, the same thing happened for them as they grew up. No amount of alt. med treatment is going to recovery anyone from autism, because autism isn’t a disease one can recover from, it is a different neurology. The brain is constructed differently, and that difference is from birth. There isn’t anything that can deconstruct and reconstruct the brain because it isn’t Legos. And because the brain is constructed differently, those individuals learn differently. Some skills will come much easier to them then others. For the sake of your son, it’s a good idea to stop using the language about autism that you are, because he may not be aware now, but I guarantee you, some day he will be, and you might not even know it when he is. As with any other child that learns their parents think they are damaged, maybe even more so for autistic children because they rely so much on us, as their parents to show then what the world is about, how do you think he will feel if he learns you believe he is damaged? He doesn’t need to be ‘recovered’ he needs love, respect, acceptance, understanding and someone to advocate for him when needed. Let him be who he is, rather then trying to turn him into the child you want him to be or feel yo deserve. I love my autistic son, he’s amazing to me. Everything he has to go through just to be part of the world and he still is always smiling and happy. That’s what I want for my son, and what I’d like to see for all autistics all over the world. It’s not hard, in fact, it’s much easier then going through all that alt. med treatment over and over again. Trust me, it is pointless, does him no good, could possibly even be doing him harm, because he is going to progress with, or without it.

      • Lisa February 24, 2013 at 02:31 #

        Lara, I am happy to hear that your child improved with school and therapy. I never said those therapies are useless. I completely agree with you, school and aba can make a big difference as well. I am very opened minded and will try many different things as long as its not dangerous and will help my son. I also fully agree that progression also comes from simply growing up. What I would like to tell you is that my sons poop, which was always like diarrhea became solid and healthy after treatments I utilized. My son also had really bad dark circle under his eyes. Never really had a good complexion. After giving him a probiotic, you wouldn’t believe the difference in his face alone. Rosy checks, vibrant coloring and those dark circles vanished.

        It’s ignorant of you to say “autism isn’t a disease one can recover from, it is a different neurology. The brain is constructed differently, and that difference is from birth.” This is a very outdated theory. The medical community is now rethinking that very statement you said. It’s ignorant for anybody to try and label what autism really is. The truth is, no one has all the answers. Do I think alternative treatments are a cure all? No. What I know is that it’s a chronic condition that the medical community hasn’t figured out. Yes, it’s a medical issues and not just a “embrace who my child is” issue because what I said before, it’s not normal for a child to have constant diarrhea. I love my child and except who he is but when he’s curled over in pain, clutching at his stomach because he ate gluten, I think I’ll continue with the path I’ve already gone down to ease the pain my child is having.

      • Lara Lohne February 24, 2013 at 03:12 #

        Lisa,

        My son never had ABA and he had very limited occupational and speech therapy, about six weeks worth before the stress overwhelmed me, and about 4 hours per year at his preschool, which he attended twice per week. So honestly, his progress was on his own for the most part. A child with autism is going to progress, with or without intervention and that includes alt. med. money traps that are out there, because that is all they are is money traps. Speech therapy can help with speech and language use, occupational therapy can help with sensory issues, but neither of them really help with ‘autism’. Pretty much, I’ve raised my youngest the same as I’ve raised my five other children before him, with maybe a few tweaks here and there to accommodate his need differences, but he hasn’t spent countless hours in therapy sessions and he hasn’t been given any special diet. Sometimes he self restricts his own diet, but he’s branching out more now too. Just a few months ago he ate broccoli for the first time on his own! I let him be who he is stims and all, because that is how he is going to learn and process everything best. In many ways, I let him create his own ‘therapy’ where he watches things, plays games, plays with his toys, experiments with different objects, asks me questions and then rocks and rocks and rocks in the chair while his mind processes it all.

        As to your son’s bowel movements, that isn’t autism, nor is it part of it. Autism is because of how the brain is constructed, and it’s naive of you to try and tell me that idea is out dated because it’s new research data that’s been found in just the past 5 to ten years. It isn’t old, it is an emerging idea. Autism is not a physical illness, it is not a mental disorder, it is not brain damage, it is differences in how the brain is wired, due to differences in how the brain is constructed.

        I am not the one who is ignorant, because I read up on the latest science and research being done regarding autism. Granted a lot of it is kind of far fetched, but genetic data and fMRI scans showing there are differences in brain construction that are universal in individuals with ASD and that those differences are mostly linked back to genetic influences is pretty much the standard being found across the board these days.

        I’m glad that you were able to get your son’s bowel issues under control, but again, bowel issues are not autism. My son has no bowel issues, neither does his dad who we believe also falls on the spectrum, unless he’s fighting a bug. Let’s not confuse the two because they are not one and the same, by any stretch. If your child has physical ailments, by all means find a way to relieve them. It can improve certain behaviors that have been linked to sensory overload, including excessive stimming, but it is not going to recover anyone from autism. The autism is still there, but their constant pain is gone, thus they are more easily able to concentrate on other things that they couldn’t before due to the overwhelming pain. But again, bowel issues don’t mean autism, and autism doesn’t mean bowel issues, they are two separate things and need to be kept separate.

  17. lilady February 23, 2013 at 06:59 #

    Gee lisa, what treatments did you use to *recover* your autistic child? Would they be some of the *treatments* that Jenny McCarthy features at her annual Generation Rescue/Autism One conferences?

    • Lisa February 23, 2013 at 22:20 #

      Lilady, it’s not nessesary to be sarcastically bitter when making a comment. I’m happy to have a nice conversation with you. As regards to your comments, I’m not sure what exactly you are getting at. I’m unfamiliar to the conference you mentioned.

      • Lawrence February 23, 2013 at 23:10 #

        Lisa – that would be the conference where they still push Chelation (which has killed children) and feeding them bleach (MMS) in a misguided attempt to “kill” gut parasites or something they think is causing autism….this isn’t treatment, this is child torture….

  18. lilady February 24, 2013 at 01:47 #

    Lisa, I asked you a simple question about the *treatments* you have used to *recover* your autistic child. If you recall, you were the commenter who came to LB/RB in defense of Jenny McCarthy.

    Here’s the list of speakers at Jenny McCarthy’s upcoming 2013 Generation Rescue/Autism One Conference. It’s a rogue’s gallery of crank alternative “practitioners”, who hawk unproven, unscientific and often dangerous *treatments/cures/recovering* practices. Jenny’s heroes include disgraced former doctors such as Mark Geier and Andrew Wakefield.

    http://www.autismone.org/content/list-speakers

    • Lisa February 24, 2013 at 03:05 #

      The treatments I’ve used for my son is dietary changes. A gluten, casien, soy, & dye free diet. But I also limit sugar a lot and keep the grains to an absolute minimum. I use anti-fungal medication & anti-viral medication. I give him a probiotic as well. I use homeopathic remedies a lot when he gets sick which work great. His doctor is a pediatrician but also has his degree in homeopathic medicine. I am on the conservative side and utilize treatments that don’t have that great of a risk. Yes, there can be some treatments that are at some risk. I am aware of the chelation deaths but I’m also aware that IV chelation is risky. I would never do that sort of thing. I am unaware of MMS. This is the first I’ve heard of it. I see where there can be a great debate because on the one hand parents put a lot of trust in doctors only to be later let down that a treatment was/is risky. However, parents should always weigh the benefit to risk ratio. Since a lot of alternative treatments are still so new, that decision is tough.

      • lilady February 24, 2013 at 04:26 #

        What types of fungi and viruses was your child diagnosed with?

        What tests were ordered by your doctor to determine the types of fungal and viral diseases that required anti-fungal treatments?

        Which laboratory performed those tests and what are the specific anti-fungal and anti-viral medicines that your doctor prescribed?

      • Lawrence February 24, 2013 at 08:21 #

        @Lisa – so, despite my telling you that MMS is “bleach” you’re first reaction is not to condemn the “treatment – which is obviously horrible & couldn’t possibly have any relevant biological process to affect autism” but to talk about a debate?

        Seriously?

      • Lawrence February 24, 2013 at 08:23 #

        I would love to know what educational institution offers a degree in “homeopathy?”

        Because, I can pour a glass of water as well as the next person, perhaps I qualify for this degree as well?

      • passionlessdrone February 24, 2013 at 17:21 #

        Hi Lisa –

        Your journey sounds a lot like my own and my son’s. Alternative medicine didn’t cure his autism, but did help him with things like his GI functioning. Anti-fungals were a life saving miracle for our son who was hurting himself, a lot, every day, until we gave them to him.

        As far as GI disturbances and autism, you might find interest in some of the research that tells us that in children with autism and GI disturbances there are qualitative differences in metabolism and microbiome populations i.e.,

        Impaired Carbohydrate Digestion and Transport and Mucosal Dysbiosis in the Intestines of Children with Autism and Gastrointestinal Disturbances

        or

        Application of novel PCR-based methods for detection, quantitation, and phylogenetic characterization of Sutterella species in intestinal biopsy samples from children with autism and gastrointestinal disturbances

        For one reason or the other, some people harbor great resistance to the idea that GI disturbances can be part and parcel with some instances of autism. I doubt including research such as above will make much difference.

        I am pleased that your child is making progress.

        - pD

      • Sullivan (Matt Carey) February 25, 2013 at 05:34 #

        “For one reason or the other, some people harbor great resistance to the idea that GI disturbances can be part and parcel with some instances of autism”

        It’s blanket statements like this (and blanket statements from the “other side” as well) that cause much of the arguments. Many would read the above and ask, “if someone doesn’t have GI disturbances, does that make one not autistic?”

        Also, “Part and parcel” is pretty imprecise. Does it mean “causal”, as in “the GI disturbances cause the autism”, which is one theory. Does it mean “the same etiology causes both” or what? Long discussions can and have gone on with one side discussing one point, while the other side discusses the other, and some discuss something else entirely. Obviously without going anywhere.

        There is a great resistance as well in some circles to acknowledge that many (even most) autistics don’t have significant GI conditions. Check the talk by Newschaffer’s group at the last IACC meeting. I’ve got the power point on my desk at work, so I’ll check the numbers tomorrow. But while there is a higher prevalence of GI conditions in the austitic population, the absolute numbers are not that high. One very interesting finding was that more of those with autism+GI had the GI diagnosed after the autism. They compared the six months before to the six months after diagnosis. One can propose a number of reasons for why this would be. Greater awareness post diagnosis?

  19. lisa February 24, 2013 at 17:52 #

    I won’t be talking to any of you anymore. I obviously came to the wrong blog. You are very closed minded to the thousands of people who have had some success. Go to u tube and you will see adults who have videos on how they did alternative treatments on themselves and how they improved greatly. I know it doesn’t work for everyone. I don’t have the answers but relying on scientific data is not always the RIGHT answer. Just because the medical community hasn’t deemed a treatment to work, doesn’t mean it actually doesn’t work. It means they haven’t poured money into a huge study. But let me say this. You can’t always rely on scientific data and evidence for EVERYTHING. I myself went through a really debilitating part of my life. I had severe pain and went to a total of 10 doctors. Non of them had a solution for me except drugs. I found out I had a horrible case of TMJ. My symptoms were many and I wont go through them all but everyday, after 2 hours of sleep, I was in so much pain, I really wished I would die. I went to UCLA and was a patient of a person who was a Program Director for the TMD and Orofacial Pain Association. They do a lot of “scientific studies” too and rely on “scientific data.” I went to him for over a year and would ask questions on alternative treatments I would come across. He would tell me why all those alternative treatments would all fail. So naturally I never did any of them nor go to doctors who claimed they could cure me. I was going to basically the best of the best. However, after a year of absolutely no progress I went to one of those alternative doctors who specialize in a natural and homeopathic way. Guess what? Yep, I am almost 100% better. Or how about acupuncture? Western Medical doctors are finally saying it works but they cant really come up with an explanation to why it does. Does everything need an explanation? Yes, it would be nice but we aren’t always going to get it.

    @Lawerence, I in no way advocated the use of MMS. I don’t know anything about it so I wont comment on it. Don’t put words in my mouth that I did not say. Also, don’t be a jerk. Just because you don’t understand the theory of homeopathy doesn’t mean you have a right to discredit it.

    @Lillday, I wont be responding to your questions. Not when you will most likely chastise me as a person for the treatments I am giving my son. Would it matter if I told you he tested positive for fungi or a virus? My guess is probably not. You will just try and twist it around or ask me something else that wouldn’t concur with your precious scientific data.

    @Laura, Again, I am really happy that your son improved on his own. When you said my sons poop issues were not autism, you know what? Maybe you are right. Maybe my son doesn’t have what is considered true Autism. Maybe many of these kids are mimicking traits of autism. Maybe we are looking at a whole new illness. Who knows but one thing is for sure, no amount of scientific evidence can possibly explain the complexity of this epidemic. Not now anyways.

    For my last comment, I never, EVER suggested the use of alternative treatment that is harmful.

    I am not imagining my sons progression or the digression he has if I run out of his pro-biotic and he’s off it for a few days. You all pride yourself on relying on scientific data. Then why are all of you denying the evidence that parents are reporting. My sons treatments are expensive. His supplements and medicine is expensive. His diet is a pain in the butt. In fact his diet is the biggest pain of it all. Why would I do all it if it weren’t making a difference? This isn’t something I or thousands of people are imagining. It’s something many of you are in deep denial about. Or maybe it’s just because you are all just retarded.

    • Sullivan (Matt Carey) February 25, 2013 at 06:16 #

      These discussions are very tough, especially when you are outnumbered and the questions and comments are very direct. Thank you for your input.

      “You are very closed minded to the thousands of people who have had some success.”

      One of the places these discussions often end is the “you are closed minded” statement. It’s ironic, in that you are talking to people who have taken the time to look at the science and the results that are out there and come to a conclusion. Having come to a conclusion based on evidence is not “closed minded”. Come up with the “astounding evidence” you claim is out there and see if people change their minds. That’s where one can say “open minded”

      I would also add, we participated in a clinical trial. The science for the teatment was not outstanding, but the team was excellent and the possible downside risk was minimal. I’ve also looked at the science and the claims behind many alternative treatments. For example, you mentioned anti-viral drugs. The most common is valtrex. I’ve seen many people think of this like a broad-spectrum antibotic–I.e. that it is good for almost any virus. Anti virals are very specific. Valtrex, for example, is specific to the herpes viruses. I’ve read people using this for measles. They have tests claiming high titers for measles (which is very different from saying there is a persistent infection) and then using valtrex. Except that valtrex can’t work on measles. The method of action just can’t do anything.

      “Well, in a few years, all these specialist are going to be eating their own words because the evidence is astounding as alternative treatments can actually recover these kids.”

      Take the subject of the article above: Jenny McCarthy and her son. Jenny McCarthy reportedly placed her son in a very expensive school ($100k/year) recently. She’s also made it clear that the GFCF diet is a thing of the past for her family. Is that part of being “recovered” or did it not work? A few years ago, a picture showed up from a (lingerie) basketball game with her kid eating a hot dog. She tweeted this year about her Valentine’s day dinner (cool that she shared it with her kid, by the way) being a meaty mac-and-cheese dish.

      People asked an important question, not to put you on the spot, but to put the discussion in context. What tests were done. For example, chelation, which was once somewhat popular, is and was often sold with a faux-test called a “chelation challenge” test. There’s a great quote a parent/doctor/blogger would often bring up from a DAN! doctor. It went something like, “I test all autistic kids for yeast. Then I treat them for it anyway, because they all have yeast infections.” Well, they don’t.

      By the way, if you think “embrace who your child is” means “don’t treat their medical conditions”, you are repeating a line by people who are critics of those who disagree with using untested and even poorly founded “therapies” on autistics. Whatever side of the discussion you are on, think about the fact that many people in the alt-med world feel the need to lie about their critics.

      ” Also, don’t be a jerk. Just because you don’t understand the theory of homeopathy doesn’t mean you have a right to discredit it”

      I believe he *does* understand the theory. The fact is homeopathy (a) has no scientific basis and (b) doesn’t work. Sorry to be so blunt, but there is no point dancing around the topic. Here is a statement from NCCAM–a government agency whose specific goal is to work with alternative medicine:

      There is little evidence to support homeopathy as an effective treatment for any specific condition.
      Although people sometimes assume that all homeopathic remedies are highly diluted and therefore unlikely to cause harm, some products labeled as homeopathic can contain substantial amounts of active ingredients and therefore could cause side effects and drug interactions.
      Homeopathic remedies are regulated by the U.S. Food and Drug Administration (FDA). However, FDA does not evaluate the remedies for safety or effectiveness.
      Several key concepts of homeopathy are inconsistent with fundamental concepts of chemistry and physics. There are significant challenges in carrying out rigorous clinical research on homeopathic remedies.
      Tell all your health care providers about any complementary health practices you use. Give them a full picture of all you do to manage your health. This will help ensure coordinated and safe care.

      • lilady February 25, 2013 at 16:14 #

        I don’t expect to get any specifics from Lisa about the tests, which laboratory performed the tests and what the test results were, to warrant anti-fungal and antiviral treatments. So typical of people who come here making extraordinary claims without any evidence to back up those claims.

  20. Lawrence February 24, 2013 at 18:38 #

    @lisa – I understand completely what the “theory of homeopathy” is. The problem is, for it to actually work, you would need to violate several well understood laws of physics.

    Not to mention that homeopathy, if done properly, is literally just water, without a single atom or molecule of the original substance.

    I find most, if not all, fans of homeopathy have no idea how it is supposed to work either.

    Sorry Lisa, but Science trumps fantasy every day of the week. I’m not being a jerk, I am just pointing out that you are, in fact, wrong .

  21. lilady February 24, 2013 at 20:28 #

    “@Lillday, I wont be responding to your questions. Not when you will most likely chastise me as a person for the treatments I am giving my son. Would it matter if I told you he tested positive for fungi or a virus? My guess is probably not. You will just try and twist it around or ask me something else that wouldn’t concur with your precious scientific data.”

    I have a purpose for asking you those questions Lisa…based on my knowledge about alternative practitioners who *specialize* in *treatment/cures/recovery* of autistic children.

    Your refusal to answer my simple questions about the fungus/fungi and virus(es) that were diagnosed and the (unknown) tests that were performed in an unknown laboratory, speaks volumes about your willingness to subject your child to not-medically-indicated anti-fungal and anti-viral medicines.

    • lisa February 25, 2013 at 03:17 #

      @passionlessdrone-Thank you for information. You comment was not only helpful but refreshing from the other garbage that I was getting. Thank you again.

      • Lara Lohne February 25, 2013 at 03:37 #

        Lisa,

        I’m not sure why you are so offended by my pointing out that physical ailments are not the same thing as, nor part of autism. I am not sure why you find anything that I said to be garbage and nor am I sure why you are acting so hostile toward me. My entire point is that a child with autism is going to progress, because autism is delay, not stasis. There aren’t any interventions that are going to increase the rate at which each child will progress, but there are some therapies that can help us with some of the more common aspects of autism, such as sensory issues and speech delay. These are only parts of the whole though, just as bowel issues are part of the whole and acting like curing your son of his bowel issues has somehow cured his autism is naive of you. And taking offense when that naivety is pointed out to you is, well, not very friendly nor conducive to useful discussion.

        I didn’t read one comment that accused you of making anything up, or lying or imagining things. Many of us are skeptical about remarkable claims and request additional information from those making the claims because more information equals a better understanding of the whole picture. You becoming defensive and refusing to answer the questions being asked doesn’t help us understand your position any better. We have seen many parents do this and really all we can assume is you don’t really know exactly what tests were done on your son to confirm he actually needs to take all these expensive medications you are forking over your hard earned money for. You wrote earlier about weight benefit and risk, and I have to ask, if the benefit worth the cost of these very expensive medications? Have you thought that perhaps diet along is enough? And you know, most yogurt on the market has probiotics in it, and you can even buy probiotic milk in many grocery stores now and it isn’t that much more then regular milk.

        Be sure you aren’t being taken for a ride by the specialist who is recommending these medications. If they are truly necessary for your child, insurance should cover it. If your specialist doesn’t take insurance, but only cash or credit cards, that should be a red flag for you right there that he or she is not a legitimate practitioner.

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