Hope and False Hope

25 Nov

Hope. It’s a wonderful thing, and something that parents of children with autism deserve to have in their lives. Fortunately, science shows that there is very good reason for hope. It shows that children with autism continue to learn and develop throughout their lives. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765385/
http://www.ncbi.nlm.nih.gov/pubmed/15666341

But false hope is another matter. As we saw in my guest blog Truth and Consequences – The Anti-Vaccination Movement Exacts a Price from last year, “biomedical support groups” for autism, so prevalent and so active on the internet, provide a sense of hope and community for parents of children with ASD. But, that hope is not real. The case of “Mary” and her son “Saul” illustrates this – Mary joined a multitude of groups, and tried dozens of “treatments” only to be left poorer. And her child, at age 8, had not “recovered”, but still exhibited many of the challenging behaviors which he had at age 2.

Mary is a bit unusual because she has persisted with “biomedical autism treatments” for 6 years. The typical cycle of membership on such “biomedical support groups” is much shorter. A new parent joins, and attempts to follow the protocol or the advice of the other parents, but if this approach does not help their child, the parent simply abandons the group, usually without comment. However, there are always newly diagnosed children, so one sees a continuous influx of new parent members, asking the “newby” questions. Typically, there is a core of self-proclaimed “go-to” people in the group who have devoted themselves to advising these parents.

The purpose of this blog post is to introduce you to one such “go-to” person, a woman called Dana, a resident of California, and the owner of a website http://www.danasview.net.

Here’s how Dana describes herself:

Hello, my name is Dana and I am 41 years old. I am an attorney, I am married, and I have four children. I homeschool all four of my children, and I do legal work part time from home.
When my second child was diagnosed with autism at age 3, I began searching the internet to learn more about him and who he is, and I was surprised to discover that I also qualified as AS, which I will use here to refer to Autistic Syndrome although I am aware it is used for other uses as well. My third child would probably qualify as PDD, but I have not pursued an official diagnosis for him. My first and fourth child are NT.

Notice that Dana makes it clear that she has no medical background, and she is always careful never to present herself as a medical professional. Nevertheless, she has a lot of credibility on the “autism biomedical support groups”. The reason for this credibility is that she is supposed to have “recovered” her second child, or rather both her second and third children. Here is how she describes her second child in 2001 when he was 5 or 6:

My son’s pedneuro told me that he was very low functioning, never developed at all, classic genetic Kanner’s autism, that my best hope for him would be assisted living in a group home some day. Now my son no longer qualifies as autistic, he will be productive and independent some day, and all of it is because of information I read in books and on the internet. Keep going, you are doing the right thing, as you now know!

Wow! a child who no longer qualifies as autistic! That was pretty impressive in 2001, and it made Dana into an authority on biomedical treatments. However, the story has changed quite a bit over the years:
2003, age 7-1/2

My son was not as old as yours when I started biomedical, altho he was older than most kids I read about. He was age 4 when I started, now is age 7-1/2. When I started biomedical, he basically did not tolerate anything.

He is nearly recovered, his last issue is language delay, all his other issues are gone. Chelation was the intervention that provided the final measure of recovery. I did a few other things along the way, but with chelation he can eat all foods now with no problems, he never has a yeast issue any more, stims only very occasionally and voluntarily stops almost immediately. He is now working on catching up with his language delay.

2006, age 10

My son has a Kanner dx, autistic from birth. In reality, he was injured from my dental amalgams plus HepB vax at birth. I chelated him with ALA, and he is almost biomedically recovered now [chelation being one part of that recovery]. Still developmentally delayed, but catching up.

2008, age 12

Well, when he was 3, the pedneuro told me he would never talk or even acknowledge my existence. Today he is 12 and just completed a first grade program. He talks, he reads, he does simple math, he loves giving me hugs, he calls us “mommy” and “daddy” and says “I love you” and lots of other things. He plays well with his siblings, defends them when we gang up on them to tickle them, is concerned when they get hurt, and he is the only child I have who will do his chores without prompting or complaining.

Because he is so far behind and is already 12, I don’t know if he will be age appropriate. But so far I am pleased with his progress. He has gone from “classic Kanner’s autism, severe, low functioning”, to not qualifying as autistic, but definitely developmentally delayed.

2010, age 14

My son has a dx of “classic Kanner’s autism, severe, low functioning”. The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes.

The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful.

Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much.

To me it’s clear that her second son is not actually “recovered” from ASD.

Dana is an amazingly prolific poster. When using the handle “danaatty”, between 2001-2003, she made a total of 9882 posts to just four yahoo groups, abmd, Autism-Mercury, EnzymesandAutism and GFCFKids. In 2003, she adopted the handle “danasview”, and since has made a mind-blowing 48,187 posts to just three groups, with the largest number, 23,705 posts to GFCFKids. That’s an average of 17 posts per day, every day, for 9 years!

Dana blames vaccines for her childrens’ ASD, even though she recognizes that she herself is also on the spectrum. And like most parents who blame autism on vaccines, she has an obsession with eliminating both viruses (presumably the residual measles virus from vaccination) and mercury (from thimerosal containing vaccines). There is absolutely no clinical evidence for any of her recommended protocols. Everything is based on her reputation as a parent who has “recovered” her children.

When viewed in isolation, a single piece of her advice may seem reasonable. However, a small sampling of her posts taken together shows a different story. Here are some symptoms that Dana has blamed on viruses or on viruses leaving the body:

plantar warts
molloscum contagium
yeast, which causes constipation
goopy green eye discharge
major red rash
dry patches of skin
bad case of the “chewies”
visual stims
pushing finger joints and cracking knuckles
OCD
low white blood cell count
loud talking
mouth sores
language difficulty
high fever
sore throat
runny nose
aching bones
fine bumps on chest

In Dana’s view, some symptoms of mercury poisoning are:

dilated pupils
headaches
neck pain
sinusitis
asthma
ear infections
tingling down arms/legs
urinary incontinence
jitters
restlessness
can’t sleep very well
heart palpitations or weird feelings around heart
fungus on feet
pain in jaw
ears popping
pressure in ears
pain in intestines/bowels when exercising
food intolerances
lazy eye

Conventional “autism biomedical” wisdom is that “yeast infections” are common in autism. And that “yeast infections” can result from either anti-viral “protocols” or chelation. According to Dana, some of the symptoms of “yeast” are:

symptoms of Tourette
OCD
anxiety
dark circles under eyes
squinting eyes
needing to chew things
eating plastic and rubber
persistent nail biting
redness/bumps around the mouth
sinus infection
hitting oneself
hitting one’s ears
head banging
making pig noises and snorting a lot
standing on the head
hands always in mouth
severe dandruff
biting a parent
yellow bowel movements
yellow finger nails
pee accidents
tics
crying uncontrollably for 20 minutes or more
cystic acne
constant high pitched vocal stims
non-stop talking
low grade fever
loose sounding cough
ringing in the ears
dizziness
constipation
humming
licking things
hyper and giggling
laughing hysterically
flying into a rage
sleep problems
problems falling asleep
sleep walking
teeth grinding
stinking armpits in a five year old
spinning around in circles
balance issues
chapped lips
extra bad handwriting
visual stims
sexual behavior
red ring around the anus
“spaciness”
anger and aggression,
headache
head banging
sound sensitivity [holding the hands over the ears]
climbing on furniture and jumping off
vestibular sensory issues
and
multiple personalities

It strains credulity that such a diversity of symptoms could possibly be attributed with such precision to only three causes. In fact, there are very few things Dana will NOT attribute to these three causes. For example:

Q: What can cause low white blood cell + low red blood cell count? A hematologist has performed blood tests and ruled out antibodies (lupus, rheumatoid arthritis, etc) and now wants to proceed with a bone marrow biopsy. He appears to think he has ruled out everything else and is now looking for Leukemia or Lymphoma.
Could mercury/metal exposure cause these symptoms? Anything else?

A: It is very possibly a mercury toxicity issue. May also be related to a latent virus issue.
Dana

Dana on viruses:

He had a wart that did not go away with high dose vitamin C [which eliminated a lot of cold/flu viruses in his brain], so I tried lysine, which caused more gains.

I watched a cold virus migrate into my son’s brain once. And after starting
anti-virals, I watched the viruses come out one by one.

The above four supplements (Vitamin A, vitamin C, vitamin D, and lysine) eliminated my son’s viruses, they no longer lie dormant.

Dana on food intolerance:

At my house, controlling yeast and bacteria was required to stop raging. Also, most of the SCD-legal foods my son did not tolerate. He tolerated nothing orange or green, and he did not tolerate fats until mito cocktail. That would have caused major problems for him.

Dana on short stature:

One of my kids had this problem. He needed carnitine and thyroid support.

Dana shows her knowledge of chemistry:

Arginine and lysine are “opposites”, sort of like zinc and copper. If
you suspect a herpes virus issue, definitely do NOT give arginine, it will increase the virus.

Dana on yeast:

The yeast is in his head/brain, not in his GI tract. This happened with my son for a few years. Just because you don’t see signs of yeast in the bm/GI tract, does not mean yeast is not present in other areas of the body.

With her prolific posts and her continuous flow of “biomedical autism treatment” advice for parents, Dana has established herself as a guru. She is one of the key people personally responsible for encouraging parents to subject their children to unproven and potentially dangerous experimentation. According to the Office of Dietary Supplements, consumers in the USA spent $20.3 billion on dietary supplements in 2004. Someone is getting rich on her advice.

Addendum:
In researching this story, I encountered something astonishing. Remember “Mary” and her son “Saul”? Saul is very clearly NOT recovered despite all the experimentation performed on him. The ultimate irony was to see “Saul” featured on Dana’s website, touted as an example of a chelation recovery!

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70 Responses to “Hope and False Hope”

  1. Catherina November 29, 2010 at 21:21 #

    one of the local “alternative autism practitioners” was touting tamoxifen as an “exciting potential cure for autism”

    YIKES. Does anyone else remember that in that Science study actually, only half of the animals recovered. The other half died.

  2. Ian MacGregor November 30, 2010 at 01:25 #

    If you are trying to convince someone about the lack of proof for biomedical interventions for autism, don’t start off with calling people curebies. Ad hominem attacks do not bolster anyone’s arguments. Parents seek cures to give their children a better chance at life. This would be a noble pursuit, except that no such cures exist.

    Reading anecdotes about a child being cured/recovered by sundry treatments makes a parent think, “Why would I deny this chance to my child?” Then any improvement is attributed to the treatment. Indeed I had one parent tell me that it would not matter how strong the proof that a treatment was ineffective, if they believed it helped their child, they would continue to pursue it. Indeed for some efficacy does not matter and take the tact that it is better to try a myriad of things which are ineffectual in the hope of finding something which is, than to do nothing.

    Just as one should be dismissive of anecdotes from the abmd community, one should also be dismissive of anecdotes about someone who is low-functioning living independently. Longitudinal studies do not suggest this is a typical outcome.

  3. Prometheus November 30, 2010 at 06:04 #

    Catherina,

    I believe that the animals who received smaller doses spread out over time showed improvement without toxicity.

    The issue is that, in the study, tamoxifen was used to “turn on” the MeCP2 gene. But this worked because they had inserted a Cre recombinase with an estrogen receptor into the study animals’ genome and had “broken” the MeCP2 gene by placing a lox-Stop insert into it. When exposed to tamoxifen (an estrogen analogue), the Cre recombinase would translocate into the nucleus and excise the lox-Stop insert, restoring normal MeCP2 gene function.

    Unfortunately, if the subject doesn’t have Rett’s Syndrome as the result of a lox-Stop insert in their MeCP2 gene (and a Cre-ER recombinase fusion gene), the tamoxifen will have no effect (apart from its estrogen antagonist effect).

    The “alternative autism practitioner” didn’t understand that and was apparently “recruiting” autistic patients for a “clinical trial” (i.e. “Let’s give this a try, shall we?”) of tamoxifen. I never did find out if any patients were given tamoxifen or if this clown ever figured out that it wouldn’t work. For all I know, he’s giving autistic children tamoxifen to this day.

    Sometimes, a little knowledge can be a dangerous thing.

    Prometheus

  4. Catherina November 30, 2010 at 15:35 #

    I had heard Adrian Bird present this (and more) work at Edinburgh Neuroscience Day a couple of years ago. Very elegant!

    I can just see how parents would fall for that “alternative autism practitioner”. After all, we know that testosterone holds back teh ebil mercury in the body and so causes autism, so anything that binds to the estrogen receptor must be good, right? Right?

    Despair setting in

    Catherina

  5. Theo November 30, 2010 at 18:10 #

    You hit the nail on the head Calli!!

    I am not hidden in autism. The real me isn’t burried undrenath it. I am the real me with autism included! It is how I look at the world, process information, think about things, feel about things, effects my relationships with others (in good ways), how I deal with PTSD, and how I interact with the world around me. Being on the spectrum affects every part of my personality. It is not some seperate being that took me over so that the REAL me must be recovered.

    I am the REAL me! Right here, as I am! I apoligize for none of it! Autism is a part of me! This is something so many who fight for cures don’t understand. Just because my perception and the way I live and deal with the world is different from NT’s does not make it invalid.

    My whole life I feel as though everyone was trying to make a square peg fit into a round whole. I can never be able to fit in that hole! Is it so wrong to not have to act and be something I am not, and get along in the world without having to wear so many masks a day?

    Is is so wrong that I don’t want all my faults to be the only thing seen, but also my strengths? To be seen as me and my Autism being ONE!!!

    *rant over*

  6. Science Mom November 30, 2010 at 18:18 #

    If you are trying to convince someone about the lack of proof for biomedical interventions for autism, don’t start off with calling people curebies. Ad hominem attacks do not bolster anyone’s arguments. Parents seek cures to give their children a better chance at life. This would be a noble pursuit, except that no such cures exist.

    @ Ian, I’m afraid that your statement is rather contradictory. You are correct that no cure exists. Where we differ is in our perspective of accepting parents who seek this non-existent cure. I find that throwing everything at the wall and seeing if something sticks and to hell with safety is repugnant. The ‘Danas’ of the world are dangerous, not only to their children, but to themselves and others who deem the ‘Danas’ as an authority.

    It is also a false dichotomy to claim that not pursuing ‘biomed’ is doing nothing. The choice ‘to cure’ is based upon the premise that the child is damaged, almost always, vaccine damaged. Now let’s say, for the sake of argument that that is true, where is any evidence whatsoever, that all of these various regimes of chelation, immunoglobulins, HBOT, and supplements reverses this alleged damage?

    Curebie is a descriptive that anyone familiar with this argument understands and yes, it is pejorative, it’s meant to be. Don’t use it if it makes you uncomfortable. Problem solved.

  7. Prometheus November 30, 2010 at 22:01 #

    I, for one, use the term “curbies” to describe those promoting fantasy-based “cures” for autism, not those desperate enough to try them. Of course, that could be because I’ve been there (i.e. I was once one of those desperate parents).

    Besides coming to realise that fantasy-based therapies only work in the movies, I also had to face the reality that my autistic child was/is the child I have – there isn’t a “normal” child hiding inside of him.

    This, I think, is the greatest disservice that the “curbies” do to parents of autistic children (and to autistic people, as well): portraying autistic children as being “lost” or “stolen” or “hidden”. Autistic people are people – just that: people. There isn’t a “normal” person hiding inside waiting to be released – they are as they are, just as I am as I am.

    Too often, parents of autistic children are told that they have to do “whatever it takes” to “release” their child from autism, even if it means risking harm or death. And, after all, if you say that there is “normal” child “trapped” or “hidden” inside the autistic child, you’re essentially saying that the autistic child isn’t a real person and hasn’t got a right to exist (or live).

    Small wonder that autistic people resent the “curebies” – I would, in their position.

    Sometimes, the “curbies” accuse me of trying to prevent parents from “curing” autistic children or of trying to keep information about “autism treatments” from parents. Nothing could be farther from the truth. I want to get more information into the hands of parents; I want them to know how effective these “treatments” are. Maybe then they could move on to learning how to live with the children they have instead of trying to make them the children they wish they had.

    Reality. It’s not always pleasant, but it’s always real.

    Prometheus

  8. Theo December 1, 2010 at 18:20 #

    Anecdotal? Hmmmm, then here in Missouri we must live in a hotbed of success, because to date, out of 100 I have met 50 diagnosed with severe autism. All of them either own thier own homes, or rent thier own apartment. These are facts.

    They go to dances, to the mall, most often swimming at the Y. Most of them live the lives of the girl I mentioned above. It is all about hard work and belief. The familie’s belief in the person and as a consequence, that person’s belief in themselves.

    All over the country I see those with the same ideas that those with the “severe kind” will never go anywhere. Is it a shock then that they do not? Who would, with such a lack of support and motivation? I truly believe that in alot of cases hard work and belief in ones self can go a long way!

    That belief gets made fact by consumers who walk through our office doors every single day. I get sick and tired of everyone telling us what we are and are not capeable of, as though they are God! In fact there is a wonderful article written about that. I’ll link it here: http://www.disabilityisnatural.com/images/PDF/negprognoses.pdf

    It’s called Negative Prognosis and the Disability Standard by Kathie Snow

  9. Ian MacGregor December 1, 2010 at 19:06 #

    Science Mom. I don’t think it is good for anyone to resort to calling anyone names in a debate. It means a degree of hatred for the person so labeled as crept into the debate, and makes one wonder if the advice itself is tainted by this enmity.

    Where did I say that I backed biomedical treatments in my post. What I presented was what often happens to parents who follow that path. I did not say that in anyway favored that action.

  10. Ian MacGregor December 1, 2010 at 19:17 #

    Theo: Are you severely autistic? You need to get someone down to Missouri to study what is happening with the population you cite. It is so different from what is published that to say it is incredulous would be an understatement. By what criteria are they severely autistic?

    Also your seems to be trying to establish fact through additional anecdotes. This does not constitute data.

    As a parent of a child who is severely autistic, all I can say is I hope for the best, but prepare for the worst.

  11. Ian MacGregor December 1, 2010 at 19:21 #

    Theo: One additional question what do you do that you know 100 severely autistic adults?

  12. Theo December 1, 2010 at 20:39 #

    I work for the Department of Mental Health, Division of Developmental Disabilities. I have a dual diganoses of Asperger’s Syndrome and Post-Traumatic Stress Disorder.

    I would love for them to come collect the data down here!!! I would welcome that. I believe personally it’s the Person Centered Planning and Self Determination programs we have set in place that are truly making such a large difference across the state.

    I understand why you say that. I have toured the hab centers here when I first started working for the Department and I ran for the bathroom and cried for an half hour! I had never seen a place like that before. But the more I have worked here the more I have learned that behaviors in and of themselves are communications, they are messages. Harder to understnad, maybe, but they are still communicating with us. We should make just as much effort to do the same with them.

  13. Joseph December 1, 2010 at 21:50 #

    It is so different from what is published that to say it is incredulous would be an understatement.

    @Ian: Maybe, but what studies are you thinking of? If Theo is saying that 50% of autistics with intellectual disability live on their own (not with family) that’s pretty unusual. If he’s just saying “classic Kanner” autistics (and we could argue about what this means) then it’s not improbable. See, for example, Szatmari et al. (1989).

  14. Theo December 2, 2010 at 02:09 #

    Not 50%. 50 people out of a hundred. The state requires that we be that specific. Being someone who specializes in my work for the department in autism, those with the spectrum diagnoses are generally sent to me at some point. Though my official title is Advocacy Specialist, I have and studied ASDs and have more connections to help and understanding on that side than in others.

    The 50% I would say are in the Kanner’s area, but not always. I have had a few who had regressed (or so the doctors and parents said, I was not there so I can’t comment)

    Before then I had been in my state’s autism movement for 10 years. 🙂 Not that it has to do with anything, but it makes me smile. 🙂

  15. Ian MacGregor December 2, 2010 at 06:11 #

    Joseph, to my knowledge, there is no clinical definition of severe autism. You are right the main factor determining outcome is IQ. As my daughter is intellectually disabled, I use that as a criterion for autism severity. But the numbers Theo cites I don’t think jive with studies for autistics without ID

    Anway articles such as

    Asperger Syndrome and Autism: A Comparative Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis
    Abstract Prospective follow-up study of 70 males with Asperger syndrome (AS), and 70 males with autism more than 5 years…
    Mats Cederlund, Bibbi Hagberg, Eva Billstedt, I. Carina Gillberg and Christopher Gillberg
    Journal of Autism and Developmental Disorders, 2008, Volume 38, Number 1, Pages 72-85

    Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder
    Abstract This study examined change prospectively in autism symptoms and maladaptive behaviors during a 4.5 year period in…
    Paul T. Shattuck, Marsha Mailick Seltzer, Jan S. Greenberg, Gael I. Orsmond and Daniel Bolt, et al.
    Journal of Autism and Developmental Disorders, 2007, Volume 37, Number 9, Pages 1735-1747

    A follow-up study of 201 children with autism in Kyushu and Yamaguchi areas, Japan
    A follow-up survey was conducted on 201 young adults with autism who were 18 or older (mean age…
    Ryuji Kobayashi, Toyohisa Murata and Kazuhiko Yoshinaga
    Journal of Autism and Developmental Disorders, 1992, Volume 22, Number 3, Pages 395-411

    Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood
    …post-high school educational and occupational activities for 66 young adults with autism spectrum disorders who had recently exited the secondary school system. Analyses indicated…
    Julie Lounds Taylor and Marsha Mailick Seltzer
    Journal of Autism and Developmental Disorders, Online First™, 17 July 2010

    Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood
    …post-high school educational and occupational activities for 66 young adults with autism spectrum disorders who had recently exited the secondary school system. Analyses indicated…
    Julie Lounds Taylor and Marsha Mailick Seltzer
    Journal of Autism and Developmental Disorders, Online First™, 17 July 2010

  16. Joseph December 2, 2010 at 14:13 #

    It’s quite possible that the adult outcome of autistic adults is improving. Autistics are not institutionalized very young typically, as was the case before the 70s or 80s.

    Now, independent living probably depends on a lot of things, such as age. It’s probably very common for young autistic adults to live with their parents. It’s also cultural. People in the US generally expect children to leave the home when they become adults, but this is not necessarily the case in other cultures.

    It’s possible Theo’s situation is just a statistical outlier. Or perhaps autistic people have a better outcome than most there, for some reason (which would be good to know, if that’s the case.) Or perhaps people with intellectual disability are typically not called “autistic” where he lives.

  17. Theo December 2, 2010 at 17:08 #

    I’m a she. 🙂 The 100 means litteral 100 people. 50 means 50. They represent a group, not a demograhpic. And it speaks to my observations, that though are anecdotal, I think are worth mentioning and listened to.

  18. Terrie December 4, 2010 at 00:38 #

    Hmmm, looking at the list of “yeast symptoms” I see:
    needing to chew things
    eating plastic and rubber
    severe dandruff
    pee accidents
    licking things
    spinning around in circles
    sexual behavior
    red ring around the anus
    sound sensitivity
    and climbing on furniture and jumping off

    I guess my dog has a yeast problem.

  19. Moses Footman February 28, 2013 at 08:10 #

    The common cold is a viral infection of your upper respiratory tract — your nose and throat. A common cold is usually harmless, although it may not feel that way. If it’s not a runny nose, sore throat and cough, it’s the watery eyes, sneezing and congestion — or maybe all of the above. In fact, because any one of more than 100 viruses can cause a common cold, signs and symptoms tend to vary greatly. :

    Our very own web portal
    <,http://www.healthmedicinecentral.com/how-much-does-lasik-cost/

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