Monday, June 11, 2012

An Open Letter to the Biomeddlers

I'm not going to couch this in the platitude, "I think you love your children but..." because I don't think you do.  That's right, I said it...

You don't love your children.

Sure you say you do, you go on about your sacrifices, how much money you spend "recovering" your children but you love you more and you may love the idea of the child you think is "trapped" inside but you don't love the child there in front of you.  You also lie about "us neurodiversity folks" who you say are just about accepting our children and having no hope.  False and you know it because it's been explained many times over.  Neurodiversity is about accepting your child as challenged or differently-abled but also providing the tools and treatments necessary to allow them to fulfil their potential and help them negotiate a neurotypical world.  It is the opposite of hopeless; we just don't treat our children as "stolen, souless shells who'll suck the life's marrow out of family members". And even though you'll try to defend this paraphrase as referring to autism, you can't because that's precisely what you see when you look at your children.

And neurodiversity folks aren't jealous of your "aspirations" and your "hope" and "recovery".  On the contrary, some pity your lack of empathy, your denial and your desperation but others, like me don't have it within to pity you any longer and see you for the inhumane, ignorant child abusers you are.  I don't think love is complicated at all, sure there are different kinds of love or different ways to love but reducing a child to a gruesome science experiment in the name of "recovery" isn't love, determination perhaps but your warped rationalisation for what you do to your children will never be love.  This ain't love:
Thank you for writing this article! We have been using MMS now for 3 weeks and have only seen positive results. I have to say the amount of worms and junk coming out of my son now is really what has convinced me to stay the course. Who knew our kids were harboring such horrific parasites inside their little bodies. I am one of the Moms who for the past seven years has seen multiple DAN docs, attended conferences, had $1000's of dollars of tests done and spent 10 times that on supplements and treatments. I cannot count the hours spent reading books and researching. I am please to say that almost every single thing we tried has been helpful in some way. Things that worked, like Chelations, TMG and vitamin support help my son to speak in 2 word utterances when he was 5, before that it was guteral sounds, finally be toilet trained at the age of 6, and to go on to make continual and significant recovery. Yasko and Enhansa helped hhim take the next step and today he is in 3rd grade, reading at grade level and talking in full sentences all the time. Just learned to ride a bike, is swimming, and even has a few friends. Cured? Recovered? No, not fully, not yet, there is still a ways to go, but he went from very severe Autism to a moderately high level of functionality. The immense amount of progress made so far gives me hope and I will NEVER quit trying to help my child.
"Worms and junk"?  Bullshit!  Your child didn't have parasites or heavy metal toxicity or any other imagined diagnosis you came up with.  You're bleaching your child you ditchpig and any developmental advancement is coincidental and in spite of you, not because of you.  It's all about you isn't it?  And where the hell are the spouses in all of this?  I'm going to say husbands because this is primarily perpetrated by women.  Do you blithely join in holding your child down for numerous blood draws for bogus tests, the infamous one two punch of chemical castration and chelation and enemas? Or have capitulated to your wife the care abuse of your special needs children because she spends so much time "researching" and shuffling them off to DAN! quacks?  Whether you are actively participating or enabling, you're still responsible for the abuse of your children.

And if it's not bad enough you are abusing and exploiting your own children, Teresa Conrick another Age of Autism luminary exploits a teenage autist for her own gain.
As fate would have it, I was to meet another inspiring and heroic man, this one was only seventeen-years-old, yet his mission and message equaled the two I have just described.  While I was waiting to talk to a presenter, I watched this young man make his way over to a space near me, talking to a nearby mother, I heard his words - "I am recovering myself from Autism."  I looked quickly as he smiled at me and I reached out to shake his hand, while I tried to hide my tears.  "How", I asked him, "are you doing this on your own?" He began to tell me his name, "Nicholas Glenski", and that he and his Dad were up from Springfield, MO.  (That's he in the photo with AofA's Jake Crosby.) I was so impressed that I asked if we could talk together, maybe I could ask him some questions for a blog about Autism?  He smiled again and was very happy to oblige.  Saying he was freezing in the air conditioning, with his dad's permission, we sat outside on a strip of warm, narrow grass, with the sun blazing above.
Congratulations, now you have indoctrinated a young man into believing he is "vaccine-damaged" and needs "recovery".   I'll bet it just thrilled you to hear this young man's beliefs because it validates your own.  You are positively shameful, gathering at that quackfest AutismOne for what passes as camaraderie with your fellow biomeddlers to share your bullshit recovery stories (even though you've been "recovering" your kid for years now) and swap "diagnoses' and "treatments" like baking tips you foist upon your children.

I have certainly faltered as a parent; I'll even go so far as to admit that I've spanked my children a couple of times.  I didn't do it out of love; I was angry and where this has a parallel with what you are doing, you are angry with autism; you hate it. Deny as you might, you can't separate the autism from the child, it is part of them.  Your hatred for autism has obscured your humanity and consequently, true love for your children.  Another parallel I can draw from my own meagre experience is the self-loathing I felt afterward.  Oh you haven't gotten to this part yet because you think you are helping your children.  I felt awful for intentionally inflicting physical and emotional harm upon my children; I still feel awful even writing this. I would imagine that actually having the realisation of the harm, physically and emotionally, you are inflicting upon your children would send you to the darkest depths of despair.  If that's where you need to go to stop this insanity, then so be it.  Get the help you desperately need and learn to love your children.

29 comments:

  1. I do think this needs to be said.

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  2. Amen, Science Mom...for your calling out the abusing parents.

    I have a profound sense of disbelief and disgust with this latest biomedical treatment "to cure autism". I am saddened that the abusers are mostly the mothers of these innocent children and yet the fathers stand by while their children are subjected to these horrendous acts.

    I've seen both of my children in pain...tears well up just remembering those awful times. I lack the vocabulary to describe my outrage of the dehumanizing violation of these youngsters, by their parents.

    Time is long since past, when we should have taken a public stand by blogging and re-posting the abusers verbatim posts about the "treatments" they are inflicting on their children. I will continue to post each and every statement that the abusers make about these treatments.

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  3. I put a link up on my facebook page. At least one comment there.

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  4. Considering that the Revolting Moms and AoA'ers reside in an echo chamber, not allowing any dissenting comments and not allowing any perceived "enemies" at their quackfest, this is as good a venue as any to vent. Education isn't working. Politeness? For those who threaten people's employment and personal safety and children? Not going to work either. I'm calling them out in hopes that maybe a relative, neighbour, teacher or therapist will take action. This is abuse, plain and simple and the last thing I'm worried about are some abusers' feelings.

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  5. Oh sorry Liz, I don't go on FB otherwise I would have posted my response directly there.

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  6. I completely agree. I am one of the "soulless" with a developmental disability. And you know what? I'm amazing. These people have abandoned loving their children in favor of the endless search for something that will make their children into something they aren't.

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  7. I posted it for you, Science Mom.

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  8. I also "don't do Facebook", Liz.

    Someone commented on your Facebook page stating misgivings with Science Mom's public stance. I strongly disagree with that poster.

    Keeping the "dirty little secret" and our reluctance to "air the dirty laundry in public", only enables child abusers to continue their nefarious abuse of their children.

    Years ago, I met the social worker who had the key and opened the doors of the locked wards at the Willowbrook State School. The inhumane conditions that prevailed there, were revealed by a TV crew. I've read the complete Federal Court transcripts and the entire Willowbrook Consent Decree where it was revealed that young children were deliberately infected with the hepatitis B virus...all part of a medical experiment to develop a vaccine.

    I also attended the hearings in Federal Court...and my husband testified on behalf of the Suffolk Developmental Center plaintiffs, to enable developmentally disabled children and adults to leave the locked warehouse for a home in the community.

    Child neglect and abuse is child neglect and abuse...whether it is inflicted by staff in large institutions, by caregivers...or by parents.

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  9. Too often I just want to say a pox on both of your houses.Both the antivax people,and the neurodiversity people.You both have a small part of the picture,but neither of you really get it.

    You really have no idea how angry it makes a parent of a severely disabled child,let alone an adult with a more severe form of autism,to have to listen to some high functioning person,who has no medical issues,and is able to work,sit and spout off about how autism is a neurological difference that makes their life better.

    This is no better than these parents who say autism stole their child,and took away their soul.Just two different sides of the same coin.I will know we have really made some progress in understanding each other,when I hear Ari Ne'eman say something along the lines of "It really sucks that so many people with autism have seizures,GI disease,and are hearing or visually impaired.I want to do my best to support research to find out why,and help make their lives all that much better."

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  10. Roger...I find your comments to be off-topic.

    This thread is about parents inflicting painful, invasive bogus oral and rectal treatments on their children, all in an effort "to cure them". This thread is not about neurodiversity within the autism spectrum.

    You have shared your physical problems and the chronic and acute pain that you have experienced due to your bowel problems. Why then, have you chosen to not post your opinion about parents who cause their children to have agonizing bowel pain and upper GI pain, because of their "treatments" to cure their child's autism?

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  11. You really have no idea how angry it makes a parent of a severely disabled child,let alone an adult with a more severe form of autism,to have to listen to some high functioning person,who has no medical issues,and is able to work,sit and spout off about how autism is a neurological difference that makes their life better.

    Your indignation is noted Roger except it's a strawman. Can you find anywhere in my post where I stated any such thing? I'm aware that there is a small segment of neurodiversity people who adhere to that ideology but I'm not one of them. I'm also aware that there are many valid co-morbidities that autists have or "subtypes" of autism with accompanying pathologies that need to be thoroughly researched and treatments developed. That is not what this post is about; it's about the imaginary illnesses and abusive "cures" that parents inflict on their children in the name of love. Do you really want to argue that dehumanising special needs children and foisting bogus medical diagnoses and treatments on them is okey dokey?

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    1. I don't think it's a strawman.Nor do I approve of false diagnoses.Why do you think I talk so much about extensive genetic and immunological tests from reputable doctors and hospitals.

      The problem is the autism debate has been so narrowly defined,and there is no real place to present a different point of view,that is outside the two main views.Either you are pro neurodiversity,as people like those at ASAN and Wrong Planet define it,and think autism is a wonderful thing,or you think vaccines stole your child,and made him a zombie or a monster.That's it.Those are the views you should have.Diet Coke or Diet Pepsi.Republican or Democrat.Same thing.

      Nowhere in the autism debate do I see anybody else saying that autism sucks,because it is a genetic disability that disables you equally in mind and body.Nowhere in the debate do I see people saying "My god,there are real genetic conditions that cause this,that we didn't know existed twenty,thirty years ago.Maybe there are adults out there who have these genetic diseases that we only look at as autism."

      These are the discussions I want to see.

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  12. The parallels with the institutionalised indoctrination and physical abuse delivered by the Church are uncanny.

    All for the good of the child, of course, and all done with a perfectly clear conscience. For these people, it is a religion too.

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  13. Thank you, Science Mom, for so eloquently stating what I and I know many others have been feeling for some time. I popped a link her in reply to MMS apologists over at my place when I just couldn't deal with it last night. It is well past time we said it like it is and said how we really feel. Once again, thanks.

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  14. Lilady, I commented on Liz's Facebook page. I'm certainly not arguing that we should be silent about the horros of MMS. On the contrary, I'll shortly have a blog post up at Huffington Post that goes into MMS in detail.

    But that is a different question than whether it's useful to tell parents that they don't love their children. If your goal is to get parents to reconsider their actions, they won't do it if you tell them they don't love their kids.

    There's certainly an argument to be made that parents who subject their kids to MMS don't love them, but so what? Would MMS be any better if we knew for a certainty that all parents who used it loved their children? No. It would be just as bad.

    In other words, stick to the facts about MMS. They are appalling enough as it is, and even some commenters at the Age of Autism post about it have called out MMS as quackery. But they won't come any further to our side if you tell them they don't love their children.

    The ultimate question is, are you just venting or do you really want to try to make people change?

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  15. Thanks for stopping by Mr. Drezner since I'm not on FB. My post is admittedly part self-indulgent venting and part eliciting a change. I'll get to the latter in a moment. This isn't just about MMS; that was just the tipping point.

    This is a small but sizable community who no longer see the child in front of them. They really do believe that "their" child is trapped or stolen from them and that is the idea they are in love with, not their autist born to them and born that way. Love is not complicated for me and I'm really tired of seeing it warped to suit nefarious purposes. You can't love your child and be able to hold them down for the endless blood draws, chelation, HBOT chambers, pharmaceuticals and tell them they're damaged from vaccines and "toxins".

    We have stuck to the facts and still do and even though you see a couple (out of thousands?) of comments on AoA disparaging MMS, there are still thousands more who either use it or will never denigrate another's choice of quackery because they themselves use other quackery and don't want to be criticised.

    They are completely immune to reason, evidence, logic and humanity. They already hate “us”; we’re the enemy remember? We’re “pharma whores”, “shills” and “vaccine-pushers”. These are people who intentionally isolate themselves from criticism and dissent, people who initiate lawsuits against their critics, threaten people’s employment, threaten people’s safety and the safety of their children and who stalk their critics. This is not a nice and rational group of people. Education doesn’t work, compassion doesn’t work so what do you suggest? They need a wake-up call, if for nothing than yes, to put them on the defensive. Because their repugnant and defiant defence of abuse may prevent others from going down the same road. No, nothing "we" do will ever bring them further to "our side".

    Perhaps the worst abusers won't change but perhaps a previously reluctant relative will step in, perhaps some of the politicians who are sympathetic to their "cause" will see them for who they really are and back away. Maybe this will start the change in the perception of others who are in a position to stop this gruesome experimentation on special needs children like the AMA and AAP and FDA.

    It's simple for me, you just don't do these horrible things to your children day after day if you did truly love them.

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  16. @ Todd Drezner:

    "...But that is a different question than whether it's useful to tell parents that they don't love their children. If your goal is to get parents to reconsider their actions, they won't do it if you tell them they don't love their kids."

    The parents who are abusing their kids Todd, know they are inflicting pain and discomfort on their children. Just like all abusive parents, the abuse takes place behind closed doors, within the home. For every parent/abuser there are "enablers"; a spouse, a close friend or relative...or a neighbor, who are just as culpable.

    I don't recall stating that the parent/abusers didn't love them, Todd. Although it is abundantly clear that they have a warped set of values and show a twisted type of love. And Todd, I don't expect that they will come over to the side of reason and stop the abuse. The only thing that will stop them is if they are a subject of a child abuse complaint, by an "enabler" who decided to do the right thing.

    "There's certainly an argument to be made that parents who subject their kids to MMS don't love them, but so what?"

    So what? Todd. Is that any justification for torturing the kid?

    "Would MMS be any better if we knew for a certainty that all parents who used it loved their children? No. It would be just as bad."

    Parent/child abusers frequently state that they love their child...or were misguided...or were the product of an abusing home. They will never admit that their supposed "love" is a mixture of anger and sadism.

    On a more positive note Todd, I'm glad that you will be blogging on the Ho-Po. I emailed the Ho-Po on Saturday, requesting that they investigate MMS and the autism "treatment", and I linked to Dr. Gorski's blog at Science Based Medicine.

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    1. Hear hear. They are abusing their kids under the guise of medicine (really, fake crap medicine).

      Am I the only one who thinks that autism doesn't need to be cured?

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  17. I used to think that parents of autistic children who were anti-vax or pro-altmed were just desperate for an answer and "cure."

    I hate to become a cynic, but every time I read articles like this, I begin to wonder if some of these parents just have some form of M√ľnchausen syndrome by proxy. They want to glorify their children's "disease."

    I wonder if Temple Grandin thinks she has a disease? And her mother honored her by giving her everything to succeed (eventually getting a Ph.D.), never once trying to "cure" her (or at least not publicly doing so).

    Maybe I don't know what I'm talking about. But maybe I'm a cynic for a reason.

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  18. @ Michael Simpson...Over at the Respectful Insolence blog, the subject of Munchausen-By-Proxy Syndrome and its possible manifestation in these parent/abusers has been explored:

    http://www.sciencelab.com/msds.php?msdsId=9924974

    Here's my take on MBPS

    "Can you say Munchausen-By-Proxy-Syndrome, Denice? Its odd that much discussion is taking place about the changes in the DSM 5 diagnostic criteria pertaining to autism. (Truly outside of my area of expertise), but perhaps there should be a new subgroup under Munchausen-By-Proxy to describe the abuse of a developmentally disabled child.

    I would “propose” that this new subgroup is marked by parents who are immature, who haven’t accepted their child’s differences from the “norm”, who have a preexisting degree of narcissism, who are angry and prone to histrionics, who view themselves as martyrs, who have a distrust of science, who are in denial and are publicity seekers, who need constant reinforcement from their “group” and…who seize an opportunity to “capitalize on their child” by pimping their stories on anti-vaccine websites."

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  19. Regarding Temple Grandin.I heard lecture Dr.Grandin gave in 2007 presented by the UC Davis MIND Institute.For me,the most enlightening moment,came during the Q&A period after the talk.Someone asked Dr.Grandin what she thought of the GFCF diet.She replied that she had heard some good results about it,and if parents think it might work,to go ahead and try it.Dr.Grandin then when on to make an admission that I had never heard any neurodiversity advocate make.That regressive autism is an entirely different thing than the autism she talk about,but she didn't have the time to go into it.

    Someone needs to ask every neurodiversity proponent if they are specifically talking about regressive autism or not.And if you regress once,you can always regress again.It's only a fever away.

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  20. Roger, we will one day have to sort out the umbrella term 'autism' or 'PPD'. As things stand, we teach that it can be caused by multiple known factors (anoxic birth injury, traumatic brain injury, genetics, meningitis etc), but there isn't any reason to regard these things as the same disease, but rather they are a group of conditions with similar symptoms. All autism involves regression and loss of acquired skills, but all illnesses, including fevers, make normal children temporarily regress. I don't think the concept that there is regressive autism versus some other kind will survive. I would suggest that the bulk of the "epidemic" - by which I mean the increased incidence caused by broader diagnostic criteria and greater awareness among the diagnosers as well as parents - will be genetically caused, and that we will find there are numerous genes involved and definitely not just one mutation. I know this suggestion increases the burden of guilt felt by parents who want to know what to blame for their child's differences (first hand, my son is autistic and it plainly comes from my side of the family), but there is little point in hiding from the truth to save our finer feelings (see why it's my side of the family....?) Intensive, continuous behavioural modification is the only way to change the outcome, and it does work. It is hard work, and it is important not to look at it as being a way to change the child you have for the one you would like to have, but simply equipping the child you have to better survive in the world, and perhaps even be independent. And that is the job of any parent, right?

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  21. Here's my Huffington Post piece on the issue for anyone who's interested:

    http://www.huffingtonpost.com/todd-drezner/autism-cure_b_1588498.html

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  22. I've already posted twice Todd. My posts are stuck in "moderation"...one of them "stuck" for hours.

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    1. It took the editors almost three days to get the post up. They can get a little backlogged over there.

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  23. Todd, I was the first person to comment there...and I posted again a half-hour ago about my experiences with my developmentally disabled son. Some "editing" going on there?

    Four days after Kim Stagliano shut down the thread at AoA, with a dumb disclaimer about providing a *forum* to discuss biomedical *treatments*, comes this...

    http://www.ageofautism.com/2012/06/autism-one-is-there-a-doctor-in-the-house.html

    "MMS sounds wonderful! Its really nice to hear that the parasites are visible to even us parents who pharma and the shill scientists can't dismiss so easily now!!!

    Since we know the worms and can see them though we must have studied them. Do we have more information from the research? Where do they come from? Personally I've always been more of a fan of prevention and can't wait to see where the research goes from for here so we don't lose another generation of children to becoming souless train wrecks. Has any of the autistic research started investigation into these worms so we know what they are?

    Posted by: Dave | June 14, 2012 at 12:58 AM"

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  24. Todd Drezner’s blog on MMS treatment is still going strong:

    http://www.huffingtonpost.com/todd-drezner/autism-cure_b_1588498.html

    I’ve replied to Ann Dachel and now a second time to Julie Obradovic who posted again to “explain” how she knew nothing of the treatment, continues to support the Quackfest, and (yet) felt that the science blogger was a big meanie.

    There are no comments in support of MMS, many comments that condemn MMS and the parents who *treat* their children with bleach. Some of the comments also discuss the incestuous relationship between Generation Rescue, Autism One and AoA and their continued support of disgraced doctors, their quack treatments, AoA’s defamatory articles and other tactics.

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  25. (commenting on an ancient laptop)

    Orac has featured Todd's Ho-Po article on today's RI blog:

    http://scienceblogs.com/insolence/2012/06/18/mms-apologists-strike-back/

    Orac has acknowledged the comments made by Science Mom, Autismum and me and our calling out these parents for the child abusers they are.

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