The ScienceBlogs Book Club

In his post today, Dr. Offit raises the point that is at the heart of the matter for me.

A couple of bloggers praised the book for its tone, that I never appeared to get angry at the false prophets described in the book. The reason for that is that I’m not the father of a child with autism. If I were, I would have been quite angry. Angry because I think that the anti-vaccine forces have taken the autism story hostage.

I’m angry. I’m damn angry. I don’t want to blog about vaccines. I don’t want to blog about the frighteningly casual way serious medical interventions are tested on autistic children like they are so many Guinea Pigs.

But I have to. I have to because the people who believe this crap and the people who push these utterly untested ‘treatments’ are vocal and not going away. There are over 20 Yahoo Groups dedicated to the idea of medically treating autism, based on the idea that they have been made autistic due to vaccines and/or other sources of toxins. To give you a flavour of what these parents do to their children, here is a post I made a week or so ago. I’ll quote a piece for you here from four different parents:

It just takes time. My twins (almost 8 now) have been doing IV CaEDTA roughly every 2 weeks for over 3 years (71 and 78 IVs). The first half-dozen or so were really traumatic, then the kids started realizing it really wasn’t so bad after all and got to the point where they didn’t need to be held anymore, then they didn’t cry anymore, etc.

…….

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins.

…….

My 15 month old son had a porphyns test by Phillipe Auguste labs that showed very high lead and mercury that spiked off the page, so our DAN is starting him on DMSA suppositories

…….

I started chelating my son at 13 months of age w/ IVs. Dr Bradstreet’s office chelates little kids. It was actually easier to give him the IVs before he turned 2. My DAN, Scott Smith, says that kids under 3 chelate much faster and it is a good idea to start early.

This is what autistic children are dealing with at the hands of their parents. This is what anti-vaccine quackery has led directly to.

So that is what is going on for these poor kids, right now. What about what they do need?

Autistic kids need education to become autistic adults. The reality is that there is no cure and to be perfectly frank with you, I don’t care about a cure one way or another. What matters to me and I strongly suspect to the vast majority of parents of autistic kids is that their kids get helped with the things that really do help. Speech therapy. Appropriate, autistic specialist learning environments. These will help.

And lets not forget something here – there are a vast multitude of both diagnosed and undiagnosed adult people on the spectrum. They need help too. They need living arrangements. They need education-to-work programs. They need doctorswho ‘get’ autism.

Dr. Offit is absolutely right to say that the biggest barrier to both young and old autistic people getting the help they need is the continuing unscientific idiocy that the autism/anti-vaccine zealots continue to spew. The media eats it up. If you think I’m exaggerating, ask someone you know who’s not involved with autism what they think of when you say the word ‘autism’. If they don’t say ‘vaccines’ 9 times out of 10 I’ll eat my hat.

So please ScienceBlog readers and scientists of the future – remember that we are here and that we need you. Please learn about autism by talking with autistic people. Learn what they consider to be their needs. In the meantime, I’ll do my bit by continuing to blog about vaccines and quacks.

Comments

#1 Frasque
October 2, 2008

I’m an adult high functioning autistic, and I wasn’t diagnosed until my late 20′s. It’s been hard getting along with no help, being considered lazy or retarded in school. However, I’m really glad I was never subjected to these quack “treatments”. It’s bizarre parents blame something as safe and well-tested as vaccines but are quick to jump on the bandwagon of unproven so-called cure.
#2 notmercury
October 2, 2008

At this stage in my life as a father of an autistic child, make that autistic children, I am neither for or against a cure for autism.

If we were to find out that autism is something that can be caused or triggered by an external factor — something that could be avoided — than yes, I would be in favor of prevention. If instead it turns out that it is almost always naturally occurring genetic variation, then my position changes.

If the only way to prevent autism is to terminate a potentially autistic life, I am absolutely opposed to a cure in that form.

I could go describing all of the possible scenarios, and the ethical dilemmas they each present, but I can’t think of a single scenario where the ravings of the lunatic fringe have or can be helpful.

I would very much like to know if there is an undiscovered something that can cause or increase the risk of autism but discoveries of that nature don’t come by stubbornly adhering to preordained conclusions and reckless experimentation of helpless citizens.

Am I angry? Damn straight I am. Just as I’d be angry with any group of people who delay, obstruct, or otherwise hijack a process that might actually help us to better understand a facet of the human condition.
#3 jypsy
October 2, 2008

I’m angry.
#4 HCN
October 2, 2008

I got pulled into this debate and dealing with the insanity because my son was denied the pertussis portion of the DTP. He had neo-natal seizures, and due to the efforts of folks like Barbara Loe Fisher… seizures was a reason to only get the DT vaccine (more recent studies has shown that there really was not an association).

So my son did not have any protection from seizures at a time when our county was having a pertussis epidemic. I had to make sure that any child he came into contact with was fully vaccinated. All of the parents were great about my question, until I came to a new group. One mom was very sanctimonious about it, and said she did not vaccinate. So I never went back to that bunch.

I did participate in online discussions about his disabilities, but I had to leave three years ago when the mercury militia made it impossible to have a sensible discussion on education plans, neurologists and the like. As it turned out at least one of those “mercury militia moms” who was pushing a certain kind of supplement was actually employed by a DAN! doctor who was selling them.

Yes, I am very angry.
#5 MitoScientist
October 2, 2008

Man Kev, you and all the other parents who have listened to reason and logic in the midst of a tough situation deserve all the praise in the world. We scientists and physicians can research and innovate all we want, but it really takes parents who aren’t so distraught with their children’s condition that they listen to any left field ideas thrown their way by the quack brigades. Bravo, I often feel so cynical about the disparity between science and the public, but parents (and people) like you really give me hope.
#6 Calli Arcale
October 2, 2008

It’s bizarre parents blame something as safe and well-tested as vaccines but are quick to jump on the bandwagon of unproven so-called cure.

It’s because they’ve been deceived. They don’t know that the vaccines have in fact been very well tested, and that the “cures” being promoted are either untested or tested against something completely unrelated to autism. What’s more, most of the practitioners selling these “cures” neglect to mention the very serious adverse effects associated with some of them.

I am not angry with the parents of autistic children. I am angry with the people who have deceived them, people like the Geiers, and Wakefield, and Kirby.
#7 David W.
October 2, 2008

Kev, thank you for standing up for autism advocacy. I’m an adult autistic, and agree that people need to let autistics speak for themselves. I’m uncomfortable with language, and am still learning it. I realize that most people find listening to I and most autistics I know an unengaging experience in comparison to listening to Craig or Kirby or even Grandin or the like.

There are communities of autistics who are from across the spectrum and across most age groups. Each autistic wants somewhat different things. Some support neurodiversity for themselves, and are against a cure. Others support a cure insomuch as they didn’t have to undergo it once at an advanced age. Others support a cure for all autistics- those who want a cure, those who don’t want a cure, and those who want there to not be a cure. The autistic side of autism advocacy is a unified group, either, but they atleast generally agree on the need for help for all autistics.

Parents of autistics, autistic and non-autistic, anti-vaccinations and otherwise, also have different views about the matter. I might delve into this in another comment.

I’m still not independent. I have a wife, and so am shelted, but I recently lost a position as a mathematics tutor. I still want help, and would benefit from job training or a professional mentor who understands how to accommodate me, and am unable to find anything effective anymore.

I too want to see more doctors who can recognise and help autistics. I’ve tired of media making help harder to find.
#8 David W.
October 2, 2008

Edit to my comment at #7

“The autistic side of autism advocacy is a unified group, either, but they atleast generally agree on the need for help for all autistics.”

Correction: “The autistic side of autism advocacy is not a unified group either, but they atleast generally agree on the need for help for all autistics.”
#9 Regan
October 2, 2008

Thank you Kev.
As another parent, I am damned angry too. Angry at the woo-meisters, angry at the media for its exploitation, and, sometimes, even angry at some of my other fellow parents who use the number of alternative treatments that they are willing to put their child through as some kind of metric of superiority to those parents who choose to stick with evidenced and educational therapies.
It’s a mess.
#10 Kristina
October 2, 2008

A mess, and the ones making it aren’t the ones who’ll have to clean it up.
#11 anonymous
October 2, 2008

As for what the biomed mothers believe and what they are doing to their children, I thought this was interesting. Who knows how many of the “horror story” kids are not autistic at all, but have something else causing general developmental problems. The biomed crew encourage everyone to see every problem as vaccine caused so they delay getting real diagnoses and real help. This is from a Yahoo! biomed group run by a board member of Generation Rescue.

“today we had an appointment with our GI for our baby (youngest NT) as she has failor to thrive, no suprize as all my kids have had this. she started telling me we were going to rule out cycticfibrosis gentic test…..when I asked what signs would show for this to actually be a concern what would it look like.

she discribed my spectrum kid to a T, I actually got chills down my spine when she was talking, she mentioned pancreatic enzyme production, lung issues (coughing, breathing problems, wheezing ect- our son had RSV for 8 months with flares in the winter some times), growth issues- failour to thrive as a child, and liver issues….. this discribes a bunch of our mito kids, has anyone ever had your child tested for this, or looked into it, are there biomedical treatments for CF that we could already be doing that has lessened symptoms. after she looked over my sons chart (she also sees him) she was shocked he hasn’t been screened for it other then us licking him to see if he was salty when really young (as this screening WAS brought up for him when he was little but was never fully tested) so both are getting looked at……I am SO nervous about this test, as it hits a cord for my son

christel”
#12 anonymous
October 2, 2008

From “chelatingkids2″ Yahoo group, 3 weeks ago.

“We are about to begin IV chelation on our almost 7yr old ASD son.
Our doctor recommended we start with nutritional/vitamin IV to see how he would tolerate the IV and also for his immune system. We had our first appt last night. The IV drip was in his hand because they couldn’t find a good vein in his arm. He cried and continued to say “take off.” “all done’” etc. This went on for about 45minutes with me knelt down next to him holding one harm down and constantly telling him to keep his hand flat, and it will be ok etc. I didn’t really have to physically hold his hand down, just kept my hand on top of his, so he knew if he tried to take out the IV I would stop him. He basically cried himself to sleep and slept the last 15 minutes the whole process took about 1 1/2 hr. How long for chelation IV’s?

It was miserable for him but we got through it without kicking and screaming just crying off and on, sometimes very loud.”

Julia Berle’s daughter caught rotavirus and uses the experience to sell others on “young coconut kefir.”

“Young Coconut Kefir Also Saved Her Daughter

Make your own healing microflora-rich Young Coconut Kefir at home with our delicious Kefir Starter. Or try all 3 Starters to benefit from the range of different microflora. Save 20% when you buy all 3!
As miraculous as Baxter’s recovery seems, Julia considers her daughter “the poster child for Young Coconut Kefir.”

Eliza contracted Rotavirus, a severe viral infection that can cause diarrhea, severe dehydration and hospitalization, when she was barely 2 years old. Little Eliza was vomiting blood, having seizures and dropped so much weight that even her doctors could not figure out how to help her recover.

Julia had never given the Young Coconut Kefir to Eliza, figuring, “You give it to your sickest kid, and at that time it was Baxter.” But Julia acknowledges, “Your whole world shifts when your child is sick,” and she desperately wanted Eliza to improve.
Thinking back to advice that “you can never have too many probiotics,” she began to feed her little girl as much Young Coconut Kefir as she could handle.
Eliza responded to the fermented drink and recovered so quickly that even her pediatrician requested the Young Coconut Kefir recipe!

Body Ecology For Life
The Berle family believes in probiotics, and all of the children get plenty of beneficial bacteria in their diets, usually in the form of Young Coconut Kefir.
Julia sometimes mixes the Young Coconut Kefir with pear juice for sweetness, but otherwise uses it like water.
She also maintains a gluten free casein free home, something that is becoming easier to do and less “out there” now that grocery stores carry gluten free alternatives. Since the Body Ecology program is gluten and casein free (GFCF), along with being anti-fungal and anti-viral, it is an effective way to heal autism and end cravings for processed foods.
Even for children. Baxter does not even want tempting slices of pizza, because he knows it makes him sick.
The Berles believe in Body Ecology, and know that Young Coconut Kefir healed Baxter and Eliza!

Julia Reaches Out To Other Parents
“I won the autism lottery,” Julia marvels, and has vowed to help others in her situation.
Now that her son is completely recovered, Julia advises some 250 parents of children with autism through her work with TACA (Talk About Curing Autism Now) and is a founding member of Generation Rescue, an organization that supports parents who seek new treatments for children with autism.
“I’m still involved because people need support and alternatives. ”
Julia has a huge amount of gratitude for Donna and the Body Ecology system for healing and internally thanks her every day for “this non-invasive, brilliant, and lovely way to help our children.”
For more information on how to follow the Body Ecology program to heal autism and illness, read The Body Ecology Diet, by Donna Gates.
For Information About Julia Berle’s Organizations:
Talk About Curing Autism Now
http://www.TACANow. org
Generation Rescue
http://www.GenerationRescu e.org
#13 Ms. Clark
October 2, 2008

I guess it goes without saying that I’m angry. I’m angry that the media will listen to the angry “my baby was destroyed by vaccines” contingent because they have had millions of dollars of money for professional PR (for one reason, and it’s a fact, you can look at the tax forms for the mercury mom orgs and see what they’ve spent on professional PR and media management).

But the media doesn’t care about it if autistic adults are angry at being labeled so much toxic waste. The media doesn’t listen if I say that I don’t want my child called “vaccine damaged” and let’s be clear there are many loud-mouths among the vaccine/biomed/epidemic/toxic parents who say that all autism is vaccine damage or the result of toxins.

The media doesn’t care if some moms lose sleep over wondering if their baby will die because of an outbreak of vaccine preventable disease that her baby is not vaccinated for for whatever reason.

Look. Julia Berle is the mom of the kid that Jennynation Rexu put on the full page ad in the New York Times (I believe that was mentioned in the book). Now Julia Berle says that her daughter developed seizures and was otherwise horrendously sick because of a … rotavirus infection???

But what do you bet Julia would say that she opposes the rotavirus vaccine for babies?

What do you bet her baby caught the rotavirus from a daycare or playgroup of unvaxed kids? What’s the possibility that her baby actually helped to spread the disease to others? I’d say there’s a chance that she did. But the antivaxers will not learn from that and Julia Berle isn’t going on GMA to explain how sick her daughter got from rotavirus.

I’m angry at the researchers who helped these creeps keep the lies going. I’m angry that the CDC and NIH put out an “Autism Alarm” that the parents used to confirm that there had been an autism epidemic (when there never was one).

I’m angry that these mercury militants who happen to have money could get face to face access, and lots of it with people like Julie Gerberding and Thomas Insel and even Thomas Verstraeten (Lyndell Redwood met with him at the CDC). But Insel until recently refused to acknowledge the interests of autistic self-advocates, instead he repeated horrible things like autistic people are “lacking personhood” (yes, he apologized for saying it, but he went on to act, at times, like a lacky for the mercury moms).

Gimme a minute… I’m sure I can list more things I’m angry about. :-/

Oh, I’m angry that the ABA parents set this whole mess up by insisting that very, very expensive therapies could cure autism. That kept the “cure autism” idea out there in front of everyone and primed them to be sold on “Hey I can cure your kid for less than you will spend on ABA…. Just buy this pill, come in for IV junk, rent this HBOT balloon, have some stem cells injected… it’s all cheaper than years of ABA.” ABA also set people up to just believe anything. They have NO scientific evidence for it’s superiority but people keep repeating the lie that it does.
#14 Regan
October 2, 2008

Ms. Clark,
I would agree with you on most points, except necessarily the one on ABA. If anyone is promising cure from ABA, I agree that is unethical…just as I think that promising cure from anything else is also.
To state my vested interest, and perhaps my bias, I use behavioral techniques with my daughter and use the paradigm to help me tease out functional relationships of behavior to the surrounding enviroment. Sometimes discrete trial, although much less than in the past, and more naturalistic strategies based on the antecedent-behavior-consequence paradigm. We had tried other less intrusive instructional techniques less successfully prior to that. This has been the approach that has been more efficient in instruction of communication, life and academic skills. My daughter is not cured–but then, that is not the expectation that I went into it with. I was simply seeking an instructional paradigm that allowed us to be effective instructors with a minimum of confusion based on her particular learning style. I agree that it can be expensive, and I agree with your critique of that reality, which is why we learned the techniques ourselves.

In Dr. Offit’s book itself, on page 4, it cites, describes, and seems to somewhat recommend behavioral treatment. I can’t speak for all behavior analysts, and perhaps there is some vested interest involved, but those that I know are as disturbed and chagrined by some of the extreme alternative therapies imposed on autistic children.
#15 Ms. Clark
October 2, 2008

Regan,

What some people call ABA is absolutely not ABA it’s just teaching. ABA is using behaviorism. Behaviorism watches behaviors and sets out to say that you do not need to consult with the thing/person you want to control externally by using rewards and punishments.

ABA’s use of sickeningly sweet fake, “good girl!!!” “Good boooy!!!” stuff is just wrong. It’s almost as bad as Lovaas and his slapping children across the face or giving them severe shocks to control their autistic behaviors. It’s demeaning.

Yes, parents say, “good boy!” and “good girl!” and some teachers, do… but they actually mean it. The whole ABA paradigm is that you can fake out the kid by slapping on saccharine syrupy “touch blue Bobby! Good boy!!!” It makes me angry that they are approaching children this way. And I know of one case where a therapist reported that a big boy, like age 9 had learned to talk that way to everyone.

“HI!!! Susie!!! IT’S SO GOOOD!!! TO SEE!!! YOU!!!”

I realize that Dr. Offit repeated what is commonly recommended, and I don’t blame him for it. I gave him feedback on the book before it went to print so he knows what I think of ABA. I don’t expect everyone to take the time to look at how abusive ABA in general is to autistic children. I don’t expect people in general to understand that just about anything is called “ABA” now because ABA is what gets funded even if what is carried out is not ABA at all, but just teaching and OT and PT and ST.

The rabid ABA parents (not you, not anyone here) absolutely laid the foundation for the Secretin therapy idiocy and the vaccine/biomed idiocy.

I have seen several biomed child abusers say that they got into biomed as a reaction to the expense and abusive, family destroying time commitment of 40 hours a week of Lovaas ABA.

Lovaas claimed and his followers continually claim that they can CURE autistic kids “if they get them early enough and spend enough money”. This is exactly the mantra of the quacks and the ABA parents and the ABA therapists fully deserve part of the blame for setting up the antivaccine/biomed juggernaut.

If I could persuade Dr. Offit to add another false prophet to his list it would definitely by Ivar Lovaas who is a totally sickening scum-bag of a human who exploited parents and children every bit as bad as Bettleheim did and DAN! does now.

I don’t think Dr. Offit wants a whole ‘nuther dozens of parents calling for his head on a platter, though. The rabid ABA parents are just about as vicious as the biomed crowd. You don’t dare question what they say is true about the success and necessity of the hallowed 40 hours a week of DTT. Not all “ABA” parents are actually using ABA, and not all are rabid, obviously, but there’s a core of them who are and… they hate me (and jypsy and Michelle Dawson…) just like the biomuddled parents do.
#16 Joseph
October 2, 2008

I’d be careful defending ABA, because if you say ABA is effective, how do you counter claims that biomed treatments are effective? ABA might have a quantity of evidence, like Homeopathy might have a quantity of evidence. It doesn’t have quality of evidence, though.

In fact, I’m surprised the biomeddlers don’t push this argument. When asked for a double-blind trial of GFCF, they could say, where’s the double-blind trial of ABA?

The standards we use to talk about biomed should be the same standards we use to talk about ABA.
#17 Regan
October 2, 2008

Behaviorism watches behaviors and sets out to say that you do not need to consult with the thing/person you want to control externally by using rewards and punishments.

Well, radical behaviorism does take internal states and motivation into consideration.
For the record, I might be considered an “ABA Parent”, although I pitch cure at no one, and feel that the level of intervention, curriculum and specific application must be based on individualization. I have some academic and practical training in the subject as I was preparing to seek Board Certification in the past. That all said, I have some quibbles myself about some applications, such as the inadvertant teaching of inappropriate behavior or rote behavior or insufficient consideration of motivation or natural reinforcement, and on a practical basis, the competence of service delivery. I know what bad ABA applications look like–a lot like bad teaching. When I see those–I cringe, and sometimes get quite angry.

Johnny Matson recently published a good review about what is actually evidenced in EIBI and the design strengths and flaws in some widely cited papers.
Matson, J.L., Smith K.R.M. (2008). Current status of intensive behavioral interventions for young children with autism and PDD-NOS. Research in Autism Spectrum Disorders, 2, 60-74.
I suspect that we have more areas of agreement than disagreement. One being the humane and respectful treatment of autistic children and those with disabilities.
#18 Regan
October 2, 2008

Joseph,
I speak of the use of behavioral method with my daughter in particular because data-analysis is part and parcel of what we do with her, in aid that how we teach is demonstrating progress towards the stated goal, and that we are not only seeing what we wish to be true, that’s why I have to corroborate across times, settings and other people–i.e., in real life. If it’s not functional or to my daughter’s real benefit, it ain’t anything. I am not attempting to speak as if this was a double-blind experiment for the entirety of the intervention field.

You raise a point about experimental design. Some of the design weaknesses are discussed in the Matson paper, as well as his suggestions for correcting those in the future.
#19 The Perky Skeptic
October 2, 2008

My emotions on this issue are so raw right now that I can’t even talk sensibly about them. I know that these parents just feel helpless and want to feel they are DOING SOMETHING to help their child, but right now I have so much anger at them for treating their kids like experiments and for degrading public health to the point that measles is once more endemic to the U.S.A. and Great Britain. So, yes, tally me in the “angry” column.
#20 B Campaigne
October 2, 2008

Can any of you armchair rocket scientists tell me what does cause Autism then?
Go on, give it a shot.
This should be fun.
#21 Chris H.
October 2, 2008

B Campaigne said “Can any of you armchair rocket scientists tell me what does cause Autism then?”

Okay, perhaps you will believe this second time when I tell you because I am an aerospace engineer… Okay, it is in Chapter 11, “A Place for Autism” pages 218 through 221, with other thoughts on page 231 and 232.

Really, read the book. This is a discussion group on the book, and it helps if you actually read the book. Get the book read it, and then come back and intelligently discuss the issues brought up in Chapter 11.

Anyway, here is a start for you to figure out what the latest research shows.
#22 Chris H.
October 2, 2008

Sorry, I forgot the link… here you can look up the latest research here:
http://www.autismresearchnetwork.org/AN/default.aspx

Now, go and read the book. Really, it is an easy to read book and not terribly long. That way you can discuss it intelligently.
#23 isles
October 2, 2008

“We are about to begin IV chelation on our almost 7yr old ASD son. Our doctor recommended we start with nutritional/vitamin IV to see how he would tolerate the IV and also for his immune system. We had our first appt last night. The IV drip was in his hand because they couldn’t find a good vein in his arm. He cried and continued to say “take off.” “all done’” etc. This went on for about 45minutes with me knelt down next to him holding one harm down and constantly telling him to keep his hand flat, and it will be ok etc. I didn’t really have to physically hold his hand down, just kept my hand on top of his, so he knew if he tried to take out the IV I would stop him. He basically cried himself to sleep and slept the last 15 minutes the whole process took about 1 1/2 hr. How long for chelation IV’s? It was miserable for him but we got through it without kicking and screaming just crying off and on, sometimes very loud.”

My God. 45 minutes of crying and begging his *mother* – one of the two people he should be able to trust and rely on most in the world – to stop this thing, but she wouldn’t, because some quack sold her on the idea.

This feels less like an autism issue than like a fundamental human rights issue. It seems like a particularly venal variety of child abuse in that it is practiced on children with disabilities.
#24 Ms. Clark
October 2, 2008

Isles,

Exactly. And kids with autism are supposed to be the ones with communication problems. What did this boy learn about his ability to communicate with his mother? That his words mean nothing. Will he be willing to keep trying to talk if his own mother won’t listen?
#25 anonymous
October 3, 2008

These kinds of comments are common on the biomedical yahoo group boards. They have a 2 and half year old on all kinds of ridiculous pills and wonder if they are making him sicker and delaying his development. ??? This post was from 3 days ago.
————–

My 2.5 yr old ASD son was on Probiotics (2xday), Multi vitiamin,ProEFA, Magesium, Vit C for couple of months. Started Enzymes (Enzyme Complete, No-fenol) and then last month, he was on Diflucan for 4 weeks (did not see much change, other than some unexplained crying during the 3rd week).
In general, we did not see any improvements rather saw regression little bit. We thought the process will take some time.

Last week he got sever cold/sinus infection and couple of days I did not give him any spplements other than Vit C & Magnesium. Then we decided to do stool test, so stopped even the Vit C. (because of the stool test requirements)

Surprisingly, without any supplements, he is doing much much better now, more alert, trying to communicate, still non-verbal, but could see he is trying so hard to tell me something, physically more active, seems like he is enjoying the fun things more..

I am totally confused and dont know how to go from here. His stool test collection will be over by tomorrow and I can go back to all the supplements. So worried, he will go back to regressing mode.

I am desperately in need of guidance. Please help.

Planning to start with Enzymes first this time, because that seemed to help his phenol issues. Not sure what helped him and what did not help him.

Thanks
Shanthi
#26 anonymous
October 3, 2008

Spironolactone is a blood pressure drug and an antiandrogen. It’s the ‘kinder gentler lupron’. From 9 days ago.——————-

The past 2 days my normally laid back happy 2 year old has been having what looks like to me panic or anxiety attacks whenever something changes or my younger son (8 months) cries. He starts almost hyperventilating. It looks like when kids cry and they get that reflex in their chest. He does this almost immediatly if the baby starts
crying or I get the wrong food out of the fridge. He has not regressed in language or anything like that as a matter of fact his therapists said he had a great day today! He keeps signing to me to put on his favorite dvd and when it plays he freaks out. This is what he is on.
Day 10 of diflucan- (he was on this before but his yeast came back after we stopped so we out him back on.
Day 2 of flagyl- (same as above)
Day 35 of spironolactone
Nothing has changed supplement or diet wise. He is on a very strict diet due to extensive food allergies. Please any suggestions. Could this be a die off reaction??? He did not have naything this severe the first round of antifungals. I gave him some activated charcoal before
bed tonite. Thanks

——————-
10 days ago. different mom
—————

I really want to know your opinions on what our new DAN! is doing for my son. She is a hollistic Doctor so she is going natural.

First off let me tell you that she told us that my son has the HIGHEST yeast in his (6yo/52lb) body that she has ever seen in anyone, including adults, since she has been a doctor.
Also he has over 30 different parasites, etc. in his body. She said that he was so high with these that’s it’s even higher than her cancer patients, that my son is VERY sick.
He is still NON-verbal (NO COMMUNICATIONS AT ALL) & still not using the potty.
So here is what she has us doing & I would love to know your opinions just for MY reassurance because he is having a HORRIBLE time that I feel pretty confident is yeast die off.

*12 Saccharomyces Boulardii (yeast killer) per day 4/3xday (capsules)

*Liver Life (started w/1 drop/day & every 3-4 days to add 1 more drop.

*We purchased a gamma machine (we call bug zapper) that we apply 2 little sticky pads (like EKG’s) on each side of his abdomen at night & set the frequency on the machine for that specific parasite & it is supposed to electrocute it within the hour. HE FEELS NO PAIN, it’s such a low frequency!!!!

Also she has these lazer glasses that he is supposed to wear 2x day for 45 minutes per day & it is supposed to calm his brain. However we can only get them on him after he goes to sleep at night for 45min.

*She had us giving him 3T/day of fish oils, but he would throw it up at night, so she told us to hold off on that until his gut is better.

Also he is supposed to take 5ts of CALM (magnesium) per day, too sour for him, he gags & throws it up immediately, so can’t do that. But she says his PH levels are the complete opposite on his saliva & urine tests so his acid is really off balance.So we have to find something different??

*THEN when we get his gut a little better we are going to start his chelation. She is going to use NDF on him. I have never heard of this & would love to know anyone’s experience with this.

My son is having a horrible time & we are trying our best to tough it out so he will be well again.

**Today at his 2nd IEP meeting in 2 weeks, the school called us in & we were told that they don’t think they can help our son, that he needs to go to a BEHAVIORAL school first, because of his crying & non social, etc. This was an ABA based school that our local school here sent him to because they say they weren’t equipted for him & so they sent him to this new one, that now they can’t help him either, so they are going to call around the next couple of days & see if they can find someone to help him…They also told us he was the ONLY child in the whole 3 yrs they have been here that they have had to send away… (Isn’t that just lovely?) Our hearts have just broken in two today!!

We are extremely desperate right now to get him well!!!
Any recommendations or opinions or anything you can share will be great, please feel free to contact me off line if you’d rather.
Thank you so much if you made it this far, I hope it made sense.
Michele (——-, Colorado)
#27 Kev
October 3, 2008

“Can any of you armchair rocket scientists tell me what does cause Autism then?
Go on, give it a shot.
This should be fun.”

I’ll tell you the same as I did in the other thread.

One cause is Rubella as in ‘Measles, Mumps and Rubella’. More ironic than Alanis Morrisette at a Song Writers Award show, no?

Another known cause of autism is Rett Syndrome. This is a 100% genetic cause.

Yet another is Fragile X. Yet again an entirely genetic aetiology.

How about you Brad? What are your thoughts?
#28 BioinfoTools
October 3, 2008

[off-topic]

Kev,

Am I able to contact you through the contact page of the blog you link? (Just making sure its your blog!)

I’d post it here, but its a bit of a side issue.
#29 Sharon
October 3, 2008

Yes I too am angry, for all the reasons outlined by Kev. I abhor the way autistic people like my son are talked about in the media, as damaged, toxic, as devastating to their families, as terrible burdens.

I am very grateful for all the work people like Kev, Ms. Clark, Kathleen Seidel and Michelle Dawson have put into countering the dangerous lies about autism “treatments,” both biomedical and behavioural.

I too wouldn’t mind seeing Lovass added to the roster of autism’s false prophets.
#30 Joseph
October 3, 2008

Can any of you armchair rocket scientists tell me what does cause Autism then? Go on, give it a shot.

I’m not going to list all the risk factors for autism that have been identified. You can look them up.

But I’ll point out that yours is a fallacious argument. It’s a form of appeal to ignorance. It’s a very silly type of argument. What you’re saying is that your hypothesis must be a good one if no one else is able to provide a competing hypothesis. This is clearly nonsense. A hypothesis is a good one if it passes tests. Everything else is irrelevant.
#31 MartinM
October 3, 2008

Can any of you armchair rocket scientists tell me what does cause Autism then?

Since apparently even a bad answer is worse than no answer at all; geese. Geese cause autism. Prove me wrong.
#32 MartinM
October 3, 2008

Since apparently even a bad answer is worse than no answer at all

Clearly it’s too early in the morning. Or afternoon, even. That should, of course, read “…a bad answer is better…”
#33 mandydax
October 3, 2008

anonymous, how is it that these children are not being taken from their parents? The parents should be charged with child endangerment and these quack doctors need to be taken to jail. I have a hard time believing that these could be real accounts, but I have a harder time thinking that anyone could make it up. That mother who asks for advice? TAKE HIM TO A REAL DOCTOR! I’m just sickened by it.
#34 anonymous
October 4, 2008

mandydax,

In case someone would like to check the veracity of those posts here are some more details. The mother who posted about cystic fibrosis did so to the mb12 valtrex group the title of her thread was “cycticfibrosis.” You may be able tojoin that group and check to see if the message is real. The mother seems to be a regular poster on that board. She uses a first and last name.
The mom who is using a “gamma” machine to rid her son of parasites updated the “chelatingkids2″ group with this on September 24, 2008.
———
Hi Everyone!
I just wanted to thank EVERYONE for all the help offered for my son.
I purchased some things for him yesterday & wanted to see what all thought about this.
Our main purpose right now is trying to get his yeast & parasites down so we can begin chelation. Also his PH levels are complete opposite so we are trying to get those leveled out also….
My son is 50lb’s & is gf/cf/sf & Beef free.

So I bought….
Biotin (5 mg)
Activated Charcoal (280mg/capsule)
Digest (for all his enzyme needs)
Organic Flax Oil from Spectrum (because he can’t tolerate fish oils yet)
Aloe Vera Juice w/ detox added
Megaflora for his pro=biotics (14 strains/20 billion Units)
GSE to help w/ antifungals???

**Please Note** I am only given him his Liver Life drops & his sacc. B. right now/ his DAN!I have not given him ANYTHING ELSE YET!!
I know to go slow so we know what works & what doesn’t,etc.

We bought orange CALM magnesium but he gags his head off, we’ve tried everyway of hiding it so I am going to just stop it because we have Yet to get any of it into him & get some epsome salt & order some cream.

She is wanting to start his chelation when we get his gut a little bettre by using the NDF but DH & I are seriously considering using the ALA/AC protocol, but I will have to do that alone so will need help w/ that also.

Is there anything that anyone would recommend for instance, if I give him this GSE is there something that I need to make sure he gets to work w/ or against it, etc. etc.

New to this & want to make it right, he’s having horrible dieoff behavior w/ this sacc. B but DAN! says we need to get it out ASAP!
Thanks again for all of your help!!

——
If you want to follow what she’s been saying and what the others are advising it’s accessible to anyone. http://health.groups.yahoo.com/group/Autism-Mercury/message/236876
—–

Here’s another, this mom’s message is from Sep. 30, 2008 to the chelatingkids2 group. She gives a first and last name as her Yahoo! identity.
—–
My son had his first Phosphatidylcholine and glutathione IV today. I asked the nurse if there could be any side effects and she said not really but mentioned that he could have a very large bowel movement and possibly some incontinence. He did urinate on himself which he has never done before but we have yet to see a bowel movement (does not surprise me). I am freaking out because about ten minutes after the push he started to get really hyper. He is very verbal and since the PK push he is verbal but makes no sense. He is screaming and yelling and just seems more “autistic” (for lack of a better word). Is there anyone who can calm me down? I need someone with more knowledge than me on Phosphatidylcholine. We have been IV chelating (dmps, edta, vit c, glutathione) every week since July 3rd so I know that it can’t be the glutathione (although I noticed that he might have got double the amount than when chelating).

The only other new supplement we started this week is carnitine but he only had half a capsule on Monday and Tuesday.

Please help me … I want someone to tell me that I a freaking out over nothing.

Thanks,
Dayna

—–

In Dr. Offit’s book he had a chapter called “Behind the Mercury Curtain” about blogger, Kathleen Seidel and what she reported finding on parent bulletin boards. This stuff is very common. It’s frightening. Some parents seem to be tormenting their children in a way that suggests Munchausen Syndrome by Proxy. Kev Leitch blogged about that possibility recently on leftbrainrightbrain. http://leftbrainrightbrain.co.uk/?p=1384
#35 Ed
October 4, 2008

The best way to end this is for the good scientists to come up with something that works. Until then, parents will seek answers that the medical community does not provide elsewhere.

It is human nature.
#36 Ms. Clark
October 4, 2008

Ed,

Autism is not a disease>/b>. There is no reason to be looking to the medical community “to come up with something” for autism.

Look at the money that gets tied up in searching for a pill while autistic people are living under bridges and being killed by police officers who don’t understand their actions. Look at all the kids who are thought of as retarded and thrown away because no one tries to communicate with them and get at their intelligence in an alternative way to just using speech.

The scientific community might get at some way to help with communication devices, but that would be much better than looking for a pill to cure autism or a genetic test to wipe out all future autistic babies (in the part of the world where people could afford the tests, anyway).
#37 Rebekka
October 4, 2008

“If the only way to prevent autism is to terminate a potentially autistic life, I am absolutely opposed to a cure in that form. ”

Autism seems to run in my family. If there was a prenatal test available, I’d absolutely be availing myself of it, and terminating a pregnancy if I got a positive test. As it is, I won’t have kids. If there was a test available, who are you to be forcing a woman to have a disabled child? Especially when you consider the divorce rates among parents of autistic kids, and the fact that she’s likely to be raising the kid alone in the end. It’s an individual choice – you can be “opposed” to it all you want, but it’s not actually up to you, thank goodness.

“My God. 45 minutes of crying and begging his *mother* – one of the two people he should be able to trust and rely on most in the world – to stop this thing, but she wouldn’t, because some quack sold her on the idea.

This feels less like an autism issue than like a fundamental human rights issue.”

While I agree that the sort of quackery described is vile, I don’t believe this is a human rights issue. Would you say the same thing about the mother of a child with cancer holding his hand down while he had the chemotherapy necessary to save his life? The experience for the child, of his parent forcing him through a treatment he says he doesn’t want, is the same – the fact is that children are not competant to make their own medical decisions, which is why their parents are empowered to make those decisions for them. Sometimes parents make the wrong decisions – but that doesn’t mean as a general thing there is someone more qualified to make those decisions.
#38 Dedj
October 4, 2008

If people can’t come up with a reasonable definition of ‘works’, then they can’t be pointed to something that ‘works’. In addition, if they treat the medical community as the only mainstream intervention provider, then they aren’t going to be looking at other mainstream therapies.

Of course people are going to look elsewhere if they don’t look properly and are unsure about what it is they’re actually looking. Such people are meat and drink for biomeds and CaAM practitioners.

Unfortunetly, the uninformed and outright hoodwinked seem to make up the majority of anti-vaxxers here.
#39 E. Quivocation
October 4, 2008

“While I agree that the sort of quackery described is vile, I don’t believe this is a human rights issue. Would you say the same thing about the mother of a child with cancer holding his hand down while he had the chemotherapy necessary to save his life? The experience for the child, of his parent forcing him through a treatment he says he doesn’t want, is the same – the fact is that children are not competant to make their own medical decisions, which is why their parents are empowered to make those decisions for them. Sometimes parents make the wrong decisions – but that doesn’t mean as a general thing there is someone more qualified to make those decisions.”

Why would anyone compare this to cancer treatment? Chelation for autism is not necessary to save life, let alone do anything for autism. The chemotheraphy experience for a child with cancer is not the same; in some cases without it, the child will be worse off.

Treatment decisions by parents are not usually “qualified” decisions, they are based on informed consent.

What kind of informed consent applies to, as you put it, “the sort of quackery described is vile”?
#40 Sharon
October 6, 2008

@ Rebekka
“Autism seems to run in my family. If there was a prenatal test available, I’d absolutely be availing myself of it, and terminating a pregnancy if I got a positive test. As it is, I won’t have kids. If there was a test available, who are you to be forcing a woman to have a disabled child?

There’s a difference between choosing not to give birth to any child and choosing to abort a previously wanted child who is then found to be disabled. I think selective abortion is abhorrent. There is no way of telling what way a fetus will develop, what form it’s potential disability will take, nor is there any link between levels of impairment and happiness of success in life. But even if there was, selective abortion is saying that people “like that” are less deserving of life than non-affected people. I think that if you choose to get pregnant, the couple must accept and make the best of whatever happens to their child, pre and post birth. Gender is the main reasons for selective abortion in some countries. The extra hardships endured by the families of girls in India (for example) are said by the practitioners to be a valid reason to screen out such children with the extra demands they place on their parents, an argument no more valid than those for abortion due to disability.

“Especially when you consider the divorce rates among parents of autistic kids, and the fact that she’s likely to be raising the kid alone in the end.”

Have you any evidence for increased divorce rates among these parents? In know it’s part of the mythology of autism, along with vaccines, but I’ve never seen any evidence for this oft repeated claim.

“It’s an individual choice – you can be “opposed” to it all you want, but it’s not actually up to you, thank goodness.”

Yes thank goodness the choice exists, and unfortunately abortion is still illegal where I live. I don’t know of anyone speaking out against selective abortion from a disability activism/feminist stance, who opposes safe and legal abortion. They (and I) are more inclined to hope to change the perceptions of doctors, ethicists and potential parents to be able to make these decision in light of all the evidence and information available.

“While I agree that the sort of quackery described is vile, I don’t believe this is a human rights issue. Would you say the same thing about the mother of a child with cancer holding his hand down while he had the chemotherapy necessary to save his life? ”

As pointed out above, if your child has cancer s/he would most likely die without the treatment, painful and heartbreaking as it is to go through. This is not the case with autism. These quack treatments are unneeded and totally lacking in evidence of benefits. They are dangerous and wrong.
#41 Calli Arcale
October 6, 2008

I agree — it is not a good idea to abort simply because of a genetic test. For one thing, autism is not so well understood that it can be diagnosed in this way. Indeed, it is very likely that it is a collection of many things which happen to have similar symptoms — and thus, you really cannot guarantee genetically whether a child will have it or not. There are other things to consider, one of them being the fact that such tests carry risks of their own. Amniocentesis and chorionic villi sampling, the two methods most commonly used to test for genetic disorders, both carry risks of injury to mother and child, and both can induce preterm labor. The risk is relatively low, but it remains high enough that most obstetricians do not recommend doing the test unless there is a particular cause for concern.

But in the end, is it really so bad to have an autistic child? The majority of autistic children are high-functioning. They’ll grow up to be productive adults. The rest fall in a range going past Rain Man. But they are all wonderful in their own way. There are two who attend my church. One has advanced to the point where he was not only able to make it through church services (a serious challenge for even normal children, and very difficult for severely autistic children) but was even able to complete confirmation class. He’s probably never going to live independently, but he’s a very nice teenaged boy. The other is a bit younger yet, and is doing quite well.

The key is for the parents to let love lead them. You love your children. That means asking for help when you need it, since you’re not going to be any use to your children if you’re exhausted. Take time for yourself, and for your husband/wife/partner/other children. It’s not really that bad. It’s certainly survivable. It does mean lowering your expectations, and trying not to focus too much on how your autistic child is interfering with your career plans, or whatever, and that can be challenging. However, it’s something you may well have to face even if your child is not autistic. I have a friend whose child was severely injured in a freak accident. We’re talking severe impairment. It’s too soon to know how much will be life-long. But this is a child who was normal beforehand. So you just can’t predict whether or not your child will be the perfect angel you’ve dreamed of. If you want to be a parent, you have to prepare yourself to love whatever you get, because that is your job as a parent.

And yeah, it’s hard. But it’s *so* worth it. Not because of what they may achieve, but because they are *yours*, which is wonderful in a way which cannot be described.
#42 Rebekka
October 22, 2008

The fact that one treatment works and the other doesn’t has nothing to do with the question of whether it’s a “fundamental human rights issue” – or would you like to make an argument for the ends justifying the means? Either the best option is to leave parents to make medical decisions for their children (and unfortunately, sometimes those decisions will not be informed ones) or the best option is to take it out of parents’ hands and put it into the hands of someone else.

“But even if there was, selective abortion is saying that people “like that” are less deserving of life than non-affected people.”

No, it’s not. It’s simply saying I could not and do not want to cope with an autistic child. My nephew is severely autistic and I love him to bits – I don’t think he’s any less deserving of life than anyone else. But to put it bluntly, he’s here already. He’s a person. A foetus, dependent on me for survival, isn’t. And so if I could test, I would test and abort if the test was positive. I’ve seen close at hand what caring for a child with autism and another with asperger’s is like.

It’s pretty clear, Calli, that you don’t have a child with autism yourself. How are you supposed to “take time for yourself” when the average break a carer of a disabled child gets is 20 minutes a day?
“It’s not really that bad. It’s certainly survivable. It does mean lowering your expectations, and trying not to focus too much on how your autistic child is interfering with your career plans, or whatever, and that can be challenging.”

It’s not so much the child interfering with your career plans. It’s the not toilet trained at eight. It’s the high-pitched screaming you can’t stop when something – who knows what – has upset them. It’s the constant vigilence you need to stop them doing something that endangers your life. It’s the probability that your partner won’t be there by the time they’re a teenager. It’s the knowledge that once they’re a teenager they’ll be physically dangerous and you won’t be able to manage them – and what then? And what happens after you die, to these children who require 24 hour care?

Of course there are risks with amnio – but they’re pretty small. It’s a risk I’d be willing to take, rather than face a life time caring for a disabled child, 24 hours a day, seven days a week.

Divorce rates: http://www.oneplusone.org.uk/publications/growingtogether.pdf – this document summarises the evidence about disabled children generally. There’s no reason to suppose that autism is any different in this regard.
#43 Navi
October 29, 2008

They weren’t advocating making selective abortion illegal. They were advocating putting more money into solutions to improve the quality of life of autistic people living now, over and above research into causes and cures. Frankly, hoping a genetic test is produced so one feels safe to have a child, which is the impression I get, is selfish and naive. As has been pointed out, the only way to guarantee not having a disabled child is to not have children. Arguing against someone’s personal opinion against selective abortion is pitting the disability community against the pro choice community. In addition it is the idea of widespread selective abortion that those who would like to make all abortion illegal use to push their argument to the ignorant. So please refrain from turning this into an abortion issue. It’s a disability issue.
#44 Rebekka
January 16, 2009

Navi, I didn’t turn this into an abortion issue, notmercury did in comment two when they said:

“If the only way to prevent autism is to terminate a potentially autistic life, I am absolutely opposed to a cure in that form.”

So yes, they WERE advocating making selective abortion illegal.

I merely responded. And I’m not having children, because we have two (and possibly three) children on the autistic spectrum in my immediate family, and as various people have pointed out, there is no genetic test available.

If there were, however, I would have it and selectively abort. That’s not “selfish and naive” – in fact I have considered the issues in very great detail. Selfish would be insisting that if there was a genetic test available, women should be forced to have disabled children anyway. I would be pleased if a test was developed, as I’d like to have kids. But I also think a great deal more effort should be put into helping autistic people who are already here. The two views are not mutually exclusive.
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#46 Chris
January 18, 2009

Rebekka said “And I’m not having children,”

Good. Whether or not my son’s disabilities were from before the seizures or were caused by the seizures (including the seizures that were from a now vaccine preventable disease) will never be known.

Because, even though you may give birth to a perfect child, remember that nature wants it dead. There are all sorts of calamities that can occur that can change your child forever*. If you cannot deal with that kind responsibility you are better off not even trying.

* Fortunately modern times has helped prevent these calamities. We can mostly prevent measles, mumps, Hib and other illnesses that can turn perfectly healthy children into very disabled children. We also have improved safety devices like car seats and realized that simple things like hanging strings from blinds or coat jackets can cause permanent damage to children.

By the way there is no genetic test for autism, which may be covered by lots of different genes doing lots of different things. The only thing we know positively that causes one form of autism is the mom having rubella while pregnant (but that also causes stillbirth, deafness and a bunch of other disabilities, which is why there is a vaccine for it!).
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